Brianne talks to Nicole Edry about chronic pain, hip dysplasia, “drug-seeking behavior” and the difference that an empathetic medical team can make.
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
First off, I want to apologize to all of my reader-listeners, because the transcript will be coming out late this week. If you follow me on twitter, then you may have seen me complaining about how much time we spent on hold with Honeywell trying to figure out why our thermostat was acting wonky. Anyway, two days of wonky thermostat plus 10ish days of holiday houseguests mean that I didn’t finish editing the transcript before the podcast publication date.
I believe that transcripts are super important and I’ll be working on the raw file right in the website post for this episode over the next couple days.
The late transcript also means that I may have missed some weird sound quality stuff or connection issues during the main episode. So I’m pre-emptively sorry for that too! I’m looking forward to getting my schedule back to normal now that the holidays are over.
Also now that the holidays are over, I’m definitely looking for new people to interview for this podcast! So if you’ve been thinking about sharing your story with me, head over to noendinsight.co/share-your-story and book a time! And if you know somebody who might be interested in chatting with me, please send them my way.
Now that that’s out of the way…
Today I’m talking to Nicole about being labeled as a drug seeker and hip dysplasia and how finding an empathetic medical team can make all the difference in the world.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
Nicole: I actually started recording these YouTube videos called The Waiting Room Diaries, where I would just talk about a day or talk about something. And because I was actually getting messages from people who were friends of friends who were other young people that had different chronic illnesses and I think they just wanted to hear from somebody else who was going through it. It’s kind of the medical community is going to screw us, so we’ve got to look out for each other!
Brianne: Totally, totally. And I think before I started it… So I actually did the first interview over a year ago. But then I didn’t figure everything else out to start releasing until this September, and when I first started it I didn’t know exactly what would be important. But I was partly like, “Everything else I’ve ever had to cope with, the number one thing that I want is to just read other people’s stories. I’m obsessed with personal essays. I’m obsessed with memoirs.” And I’ve always had some health stuff, but I had a really terrible flare a year ago, and I was like, “I don’t know what’s going on yet. I have no idea what’s wrong, my doctor doesn’t seem to think there’s a problem, but there is. And I just can’t find accounts of this part of illness.” And I think there’s a ton of reasons for that. But that really matters, the middle of it. And a little bit earlier I was also like, “Maybe people want to know the things that I do to cope.” And then a month later, I was like, “Yeah… maybe, but I don’t even think that’s the important part. That feels a side…” You know?
Nicole: I think people want to know how to cope, but in the context of the larger narrative, and sorry that’s my marketing speak coming through. They need that emotional tie. Like, how does this relate to me? It’s one thing to just digest a fact in your brain and it’s a whole nother thing… that actually reminds me of a conversation I had with my mom. My mom is this amazing chef, nutritionist and health and wellness consultant.
Nicole: Oh, it’s been a wonderful resource, but I heard from the beginning about all these supplements and she’ll literally show up and surprise me and check what’s in my fridge and I’ll get guilt tripped about it. In a very Jewish mom fashion too, which is the ultimate level of guilt tripping.
Brianne: It sounds perfect.
Nicole: So she actually runs this amazing program in New Haven where they’re doing this initiative on this local community farm. And they work with all these lower income families. And a lot of them are Latino, like my mom and myself, because they bring these families in who are at risk for diabetes and obesity and all these things, and they teach them in the first hour. This woman teaches them how to grow things. And in the second hour, my mom teaches them the nutritional value and how to cook them and how to make recipes that are on a budget. And it’s made all this difference in people’s lives. And it’s been really amazing, she’s done it for a few years. But she came to me once and she goes, “I’m really frustrated with the people in this program.” And I was like, “Why?” And she goes, “Because I’m just asking them to do this. I’m just asking them to change this, and they’re just resistant and they know it’s for their own good. They know it’ll help them and they just won’t.” And I said, “Mom, from your perspective, it’s just one thing. From theirs, it’s one more thing. You have to ask yourself, ‘what is the cost of change?’” Because you have to realize that when you get sick, and I say this actually in the video series I was talking about, when you get sick, it’s not like your world changes. Your world is just gone. It’s just gone and there’s no frame of reference and you’re just expected to understand what to do and you don’t know what to do. And different people are all weighing in and telling you all different things that are good for you and short term and long term and western medicine and non traditional. And if one more person tells me to try yoga, I’m going to be like “Yoga’s not a cure!” It’s all well intentioned, but there’s so much coming at you. You’re being asked to change how you walk, how you move, how you think, how you plan your day, how you eat, everything. And I said, “So you have to realize that you’re basically asking people who are on quicksand to dig deeper into the quicksand and just left them to be like, ‘Yeah!’”
Brianne: “Got it. It’s seamlessly incorporated into my life now, thank you.”
Nicole: Exactly. “Let me use my AI programming to perfectly integrate this and make sure that I can juggle personal life and social life and professional life and health and wellness and my own wellbeing.” You know what I mean? All of those things. It was an interesting conversation.
Brianne: Yeah, yeah, I hear that for sure. And I love just the throwaway comment of, “If one more person tells me to try yoga!” I love it because it’s so the stereotypical thing. And plenty of people are helped by yoga. It has nothing to do with yoga. It’s just that so many people who are like, “Oh, well, I was stressed and that was affecting my health and yoga helped. So whatever is happening with you, yoga.” And you’re like, “Maybe… But I think you’re mishearing me.”
Nicole: [laughs] It’s like they say yoga as if it’s the fairy godmother in Cinderella or this magic pill. It’s either yoga or acupuncture I hear all the time. And I just personally, I’ve actually tried both of them and they just don’t work for me. So it’s not that I’m not open or willing. I’ve tried bikram, all different kinds. It’s just not for me. And I’m a dancer. So I think maybe that’s why yoga, for me, I just want to move, I don’t want to hold still. So that’s just my personal preference. But it’s so well intentioned, my friend Sel from Australia who also deals with a lot of chronic pain stuff, we actually joked that we would start a Facebook group called Fuck Yoga and just make t-shirts for whenever somebody said that just so that you could be like, “It’s so sweet. But please suggest literally anything else.”
Brianne: Yeah. “I know about it. I’ve heard of yoga.”
Nicole: “It exists. I’m aware.”
Brianne: “Thank you.” Yes. Okay, perfect.
Nicole: So now that we’ve established that…
Brianne: It’s a good baseline! It’s a good baseline, and I’m 100% leaving all of that in.
Brianne: And then let me give you my traditional starting question, which is: were you healthy as a kid?
Nicole: Yes. Technically, although it did not come out until a year ago, I was born with hip dysplasia, which means that my hip was not in the socket. Which, usually they catch that when you’re like, one or just born, because was one leg is shorter or it manifests. But I was such an athletic kid that I played sports to such an insane degree until my early- to mid-20s that the muscles kind of overcompensated for it so they didn’t catch it until this year.
Brianne: Cool, cool.
Nicole: I was very, very active as a kid. I had a couple of weird things, but I think all kids do, you know? I had vertigo out of the blue for a year or two, just stuff like that. But I was very healthy. I was very active and I was able to do like, I did dance and multiple sports. And I played rugby. And I did all this stuff. And it wasn’t until I graduated college, and I was 22 and living in China that I actually started to get sick. So a little under… almost ten years ago.
Brianne: Okay. Got it, got it. Yeah, and I think that’s super common. And the thing, like your vertigo example, where when you look back you’re like, “This could be something that happens to everybody,” because you wouldn’t really know. But now that I think about it, it’s often associated with some pretty weird stuff that I have names for now. Vertigo is so weird and deeply uncomfortable.
Nicole: It was weird for me because they actually… this is when I should’ve got an instinct something was wrong. Yale actually wanted to study me, I’m from New Haven, because I had vertigo, but with none of the normal side effects or triggers. So I could go… I could do heights, I could do carnival rides, I could do everything. None of it would trigger vertigo. But I would be in the middle of a hurdle race, and I would legitimately black out. There were a couple of times that I [snaps] dropped unconscious and then would wake up five minutes later and be like, “What’s going on?” And then they were like, “We think you have vertigo? It seems kinda weird…” But it just went away after a year or two so they were just like, “We’re gonna roll with it. We’re just going to pretend it didn’t happen.”
Brianne: Yeah. This is just a fun part of your history now.
Nicole: Yeah, exactly.
Brianne: That’s good. That makes sense. Okay, so then what happened when you were 22? What were the first…?
Nicole: So yeah. So it’s… my friend jokes sometimes I should just have this Lifetime movie story.
Brianne: Yeah, that sounds great.
Nicole: [laughs] Isn’t that what we all want, really? So my friend was this entrepreneur who started this business over in rural China. And about a year after I graduated, I was kind of bored, and I wasn’t really sure what I wanted to do. And he invited me to come over and I laughed in his face, because I was like, “I don’t speak a word of Chinese. I don’t know anything about teaching or education.” But then I was like, how many chances in my life am I gonna have to go live in China for a year. So I did it. And I ended up… I’m definitely very, very much a feminist. I’ve always considered myself to be able to play sports as well as any man, because we can. But you know, where I was it was kind of really just more men that played sports and women played ping pong, and that was it. And I came to realize that it’s because they didn’t think in the area that women could actually keep up. So I joined an all men’s soccer team.
Nicole: In an all men’s league made out of local professors and different people. And my team were these amazing guys from Spain and Africa, and all over the world that were really good at soccer.
Brianne: Other places where soccer is serious.
Nicole: Yeah, exactly. And I’m the only woman. And I told my students about it, too, and I’ll never forget how shocked they were. And they all started showing up to the games. These girls were like, “Wait, there’s a girl playing with those boys! She’s playing with them, she’s keeping up with them.” And my first game, actually, the other team captain came up to my captain. He goes, “A girl wandered onto your side of the field.” And he was like, “No, she’s our center defender.” And the look on this guy’s face was just like, “I’m sorry, what?” So actually, when he kind of made a run at me, I could tell that they sent this big guy over to try to intimidate me. I’m a little… You know, I didn’t really take that too well. So I might have drawn upon my rugby experience and tackled him just a little bit.
Nicole: Just to wipe the smirk off his face. And there was just dead silence, and it felt like such an “I am woman, hear me roar!” moment. So I’m playing in this league and I played for most of the year and I started noticing some kind of aches. And as an athlete, you’re very in tune with your body, and something just felt off. And sometimes my hands would shake or my memory with lapse or I’d just have these weird things. And I remember this one night I had this meltdown. I went across the hall to two of my friends, this amazing couple Lucy and Cory. And I just started crying, and I was freaking out, and I was like, “I know something’s wrong. I don’t know what it is. I know my body. I know it sounds like I’m just having a panic attack and it’s all in my head, but I know myself, and something’s not right.” And they were there for me. They talked me down. They basically were like, “There’s only a month and a half until we have to go home. You can’t really get the care you need here.” Because obviously I’m not in the system. I wouldn’t even know how to begin, so they were like, “When you’re home, get it checked out.” I kind of just had to wait for the next couple of months and I kept playing because I’m very stubborn, and getting some joint aches. But I just pushed through.
And then I get home, and I’m just so weak and so out of it and just listless. And it’s just not me. So thus began the saga of me trying to go to hospitals and doctors to figure out what was wrong, and it literally was a saga because my test results were coming up normal. I was exhibiting all these symptoms, but they didn’t fit anything. And so I’m seeing all these specialists in the Yale system, in multiple hospital systems all throughout Connecticut, and nobody has answers for me. And what’s worse, they started to flag me as a seeker and a hypochondriac and all this stuff. But at the same time, they put me on five different medications. And I’m not that big and the dosage that they had me on… like they had me on gabapentin is this nerve pain antiepileptic that they’ll use sometimes, it’s very strong, and people who have been in car crashes and had spinal injuries will take about 1,000. They had me on 3,600 mg of that. They had me on daily painkillers, opioids. They had me on daily NSAIDs, and one or two other things. So I was this zombie. They overmedicated me, and I kept trying to go back to them being like, “I don’t want your meds, I want your help. I just want to know what’s wrong with me.”
And that’s when I started to hear the term medical anomaly and things kind of continued this way for a few years, and it was really hard because I’m having to somehow work this whole time. I worked as a project manager. So I was freelancing or working at agencies and having to prove to companies that they should hire me despite the fact that I have to erratically take time off and I can’t know when. And it’s not like I’m in a position where I could just, you know, being a writer, where other people aren’t dependent on you to lead. As a project manager you have to lead and be there for people and literally be at the center.
Brianne: And maintain timelines.
Nicole: Exactly. So there’s kind of an irony in that. But that’s my profession, that I went into. But so it was really rough, it really was. And being on all those meds, I felt like I wasn’t really myself and I ended up in an abusive relationship for a couple of years during all of this. And it’s almost like the medical industry, as well as this ex, and slowly but surely other people, all were doubting me, and they were trying to get me to doubt my sanity. And they were all telling me that it’s all my head or the fact that I’ve been through a lot of trauma in my life. So it was my trauma manifesting, or all of this stuff. And they started to convince me, and I was kind of like, “Well, I’ve literally seen so many different specialists by now. I’ve been to the ER over 15.” And I did not go willingly most those times, either a friend or family member or a doctor would send me because I just point blank refused, because this is actually an issue that I talk about too. There is not an emergent treatment center for chronic pain sufferers. Our only choice is to go to the ER, but at the ER they have to do triage. They have to prioritize the people who are life saving, because that’s their job, that’s what they have to do. So somebody like us who has pain symptoms but doesn’t have a quick and easy fix, doesn’t have a label, they can’t really help you. So you end up just having to sit around and wait and sit around and wait. And oftentimes the only reason I would do that was because I wasn’t always on private health insurance. I was on state insurance and you’d have to get referrals. And a lot of times, if you had existing medical bills, they’d find ways to block you and make it more difficult to access care, even though that’s very much illegal. I literally got told by a hospital once that I couldn’t show up to their subspecialty clinic because I was from a different zip code.
Brianne: Hmmm, that’s helpful. Yeah. I mean, okay. One, the mess of insurance. Yes. Let’s talk more about that. But two, with the ER thing, I first of all totally hear you. Even when weird smaller stuff is happening I get in fights with my husband about it where I’m like, “Oh, this weird new pain is going on right now, and it’s not critical. But it’s weird and new.” And he’ll be like, “Do you want to go to the doctor, go to the clinic or go to the hospital?” And I’ll be like, “Why? No.” So we get at odds about that because you know what the options are. And it’s like, there’s pain that’s manageable. And then there’s pain that is critical enough or worrying enough that you definitely want to investigate. But when you’ve gone to a doctor about manageable pain enough times and you know what their questions are, you’re like, “They’re going to ask the same questions. If I don’t need drugs for this and I’m not worried that it’s something else…”
Nicole: Yeah, and to that point, it’s also we are very aware of the fact that there’s a gap in the system. The ER is for people with critical, life-threatening or highly emergent conditions. Urgent care is basically the nurse’s office from high school. They can do some stuff, but they basically have to pass the buck because they can legally only do so much. There’s nothing for us. So we recognise this, but the industry treats you almost like they blame-shift to the victim. So they treat us like it’s our fault that we keep coming back and we’re like, “But we don’t have an option! You are giving us no alternative.” There’s no emergent treatment center for people who have chronic vs acute. It should be different because we do need someplace where people will understand, they’ll ask not the same questions over and over. And again it’s also that you show up as a patient and then you hear them and you’re like, “Okay, they’re going to run an EKG. They’re going to do the blood work. They’re going to check out my lungs because I’m having chest pain. That’s all going to come back normal, and then you’re going to come back to me and just tell me to sit around for a couple hours and take a Tylenol, and that’s going to cost me all this money. It’s going to be all this stress, and it’s going to be yet another black mark on this record where they’re making it seem I’m this seeker.”
So this actually all kind of came to a head after a few years, and I also kept hearing all these different diagnoses. So they told me that it was fibromyalgia, then they said, “No it’s not. It’s lyme disease.” And they put me on this medication for lyme disease that landed me in the hospital because it was so potent with all the other stuff they were giving me too that I ended up being admitted to urgent care. My then-boyfriend came home and I was on the floor and I had been unable to move for eight hours. So that’s when they were like, “Okay, we actually we don’t think it’s lyme. We’re back to fibromyalgia.” And they kind of just keep switching up the diagnoses and just throwing different medications at it. And the traditional meds that they give you for fibromyalgia are cymbalta and lyrica and drugs like that. But those just don’t work on me. It just wasn’t working on me, so then they were like, “Oh, maybe it’s not fibromyalgia.” And I’m kind of like, “Make up your minds!”
Brianne: “Find something!” And part of what I had to make my peace with, and I got a lot of support from councilors in the system, was recognizing that I might never have a label. I might not ever have a diagnosis, and that’s something that you really have to come to terms with because that can very much haunt you. So all this stuff is happening, and I’m kind of still working through all of this, still pushing through, overmedicated up the wazoo in this, in this bad relationship. But part of me is still fighting. I was like, “I know something is wrong. I don’t care what everybody else is telling me. Something’s wrong.” And then things come to a head when I don’t remember exactly what happened, I was having trouble breathing or something, and I was brought in to see a doctor. And they gave me a shot of penicillin to help me and that’s how we found out that I’m highly allergic to penicillin so I had a critical reaction that landed me in urgent care. And this is just one thing after another. You’re trying to have a life, I’m in my mid 20s trying to have a life and do all of this. So I’m really overwhelmed and discouraged, and I’m kind of getting weaker and weaker. And the pain is getting worse and worse.
And one day I’m seeing my GP who’s this awesome woman, and I have chest pain. And she just looks at me and she was like, “You know what I have to do, I have to send you to the ER.” I was like, “Please don’t.” I begged her. I was like, “Please don’t. I don’t want to go through this again.” And when EMS came to pick me up, she made a point, and only later did I recognize this, she made a point of telling them that I had morphine and opioids and all this stuff at home that I was refusing to take because I couldn’t function on painkillers. I couldn’t do my job and be on painkillers so I wouldn’t take them. And she made a point of telling them that. And I thought it was kind of weird, but I was very out of it at the time. So over in the ambulance, they offered me morphine and I said no, and my pain gets worse and worse. So a few minutes later, I was like, “Actually, I’ll take some of that.” And they go, “We’ll wait until you’re in the hospital.” And I’ve been in ambulances before. That’s not how that rolls. So I was like, “That’s weird.” They wheel me in. They take me to this dark, quiet room, and they put me on this cot. Turns out later that I suffer from severe migraines, and one of my symptoms is something called allodynia. And allodynia just means that your skin gets hypersensitive to touch. Anything touching you is agony. So they put me on this narrow painful cot, and I was screaming because I was just asking for some pillows. I was in so much pain I was like, “Just get me pillows!” They left me in there and ignored me for an hour, just screaming by myself. And then a doctor finally shows up and he goes, “There are actual sick people in here who need our help. And they don’t deserve to be bothered by the likes of you.”
Brianne: “Great. Thank you.” Fuck.
Nicole: I’ll never forget it. He said that to me and I was so taken aback and I was just like, “What?” And he was like, “You are bothering the people who actually need our help. Stop screaming.” And I said, “I just want some pillows or some help.” And so after five minutes of this guy talking to me like this, I said, “I want to see another doctor. I don’t want you to be my doctor.” And he goes, “If you don’t see me, you don’t get the drugs.” And I said, “Fine. Don’t give me any drugs. Give me another doctor.” And that’s when he finally consented to come over and examine me, because I guess that’s some type of test that I passed. So he comes over. He examines me. He orders all the standard blood work. All of that stuff that I knew, and I’m telling him, I’m like, “You’re not gonna get any results from this.” He pumps me full of ativan and another drug, way too high of a dosage. So I’m just floating and super out of it. And the male nurse comes in and I’m crying because I just dealt with all this by myself and this horrible person. And the male nurse comes in, he comforts me, and he seems like this nice older guy. He helps me change into the hospital gown. And then when he thinks I’m asleep, I heard him say as he’s checking my arms, “That’s funny. You don’t look like a seeker to me.” And he didn’t mean for me to hear it. I said, “What?” And he was like, “Oh, nothing.” And that’s when I first found out that they had flagged me as this seeker.
Brianne: Yeah, and they’re treating you like you’re in withdrawal.
Nicole: Mm hmm. And then he hits on me!
Brianne: [laughs] Gross.
Nicole: At my most vulnerable, you just helped me change and comforted me after this. I had never felt just so dehumanized in my life.
Brianne: Every single part of that…
Nicole: Is horrific. I know. And you want to know kind of the best/worst part about all of this? All the blood work came back normal. All the stuff they were going to just discharge me, to deal with it again. You want to know who stepped in and helped me? The nurses and the patient care advocates who had seen me in the system. And they knew that I just needed help. They snuck in when the doctor was out. They legit snuck in and they said, “What do you need?” And I said, “I need referrals to these three specialists.” They said okay, and they went behind this guy’s back to do that because they were the only ones who were like, “This girl’s just asking for help. She’s not asking for you to medicate her and dehumanize her and sexually harass her.” And then the guy, by the way, who hit on me, texted me after this because he told my mom that he knew somebody going through something similar. So he asked for my number and he’s texting me. Calling me his princesa and all this stuff.
Brianne: Jesus Christ.
Nicole: Yeah, so many lines had been crossed. So the next day I made a promise to myself that I would never be made to feel that again because of the medical system. So I went off all of my medications except for one. I went from having six different drugs in my system to just one. And I reduced that dosage down, and my doctors fought me on all of this, especially because I did it all cold turkey. And I was like, “I’m doing this.” That was the red line where I was like, “That is unacceptable on every single level.” And one of my biggest regrets to this day is that I didn’t file an official complaint against those two, because I was just in a pretty messed up headspace. But that was kind of a turning point.
Brianne: Yeah, it’s one more thing. Fuck, first of all. And then, okay.
Nicole: Yeah. And then it gets more dramatic. That’s why I said this is a Lifetime movie. This is just the first act.
Brianne: Yeah, no, this is the moment. So I just want to get some context questions. So when you’re talking about pain, you mentioned skin pain, which is also super associated with fibromyalgia. I feel like that’s part of the diagnosis. And earlier you were talking about joint pain. So were there different categories of it that you were separately identifying, or was it kind of all one big mess?
Nicole: Kind of yes and no. So now I know that I have severe migraines. I have fibromyalgia. They told me that I have undifferentiated autoimmune disease, so they know that I have autoimmune, they just don’t know what specific kind it is. And then I have hip dysplasia.
Brianne: Sure. So you had at that time unidentified joint pain.
Nicole: And I’ve got an extra neck rib! Turns out that’s a thing. I did not know that was a thing. It’s called a cervical rib. That’s just kind of hanging out there. So I’ve just got some fun stuff. But at the time, it was more just that it had started localized in my left shoulder and then it spread. So it was just this systemic pain, this deep pain that was everywhere. And then it was worse in the joints, and it was worse-worse in my shoulders and in my hips.
Brianne: Okay, okay, so that makes sense. So you’re going about that and then being medicated across the board with different pain things. And then I was also wondering with lyme, because lyme is a really fun thing to dig into, but also a clinical diagnosis that has testing. So was it based on testing, you had a western blot?
Nicole: Oh yeah, they did testing. They sent it out to a specialized laboratory and they did test it.
Brianne: Probably igenex, that’s like the standard.
Nicole: Yep. And it came back, I guess as a false positive. And they put me on these meds.
Brianne: Like doxy or something. Like a high antibiotic.
Nicole: And they put me on that. But they also put me on something, and I’m trying to remember the name of it. It was hydroxychlor, or it’s something that they give you if you have, like, malaria. It’s this crazy intense drug. They put me on that and antibiotics. For like, two months. So that just stripped my system.
Brianne: Yeah, which is awful. And then I would guess if there was an antimalarial, you were probably tested for the coinfections, which is babesia and bartonella are the big ones. Because babesia is like… so in at least two other episodes, I have forgotten the word for malaria. So it’s good that you said it first because I always run into this problem. But babesia is a sister infection to malaria, so it has similar treatments. Okay, so those are just fun extra details that I was curious about.
Nicole: Fun details. And then actually the irony of that too is I ended up back in the hospital because all the meds they have me on, and this world-renowned, top in this country, infectious disease specialist comes in and again I’m by myself, I’m super out of it because I’m hooked up, they have me on all these drugs. And the first thing I remember asking was for him to put on gloves because he had… His hands were so dry and scaly and flaky, and I’m like, “We all have different skin problems or whatever. But you’re a doctor. You shouldn’t be touching me without gloves anyways.” And he’s like, doing a physical exam without them, and I’m asking him to put gloves on. He’s ignoring me. He was acting superior and egotistical and condescending. He’s giving me a pop quiz as if I’m some anatomy student like, “Oh, what’s this part?” And I’m just like, “Who are you, dude? What are you doing? Why are you being so awful?” And then he goes, “Oh, you don’t have lyme disease, you have fibromyalgia.” And I was like, “What? I have these test results that say that I lyme.” And he goes, “No, your doctor’s an idiot. You have fibromyalgia.” And I started crying and a nurse who was walking by had to pull him aside and basically be like, “Do a better job with your bedside manner.” And then he kind of came back in and still wouldn’t explain. Still wouldn’t tell me how those results were wrong or how I had somehow had lyme and babesiosis and now had neither. And it was just fibromyalgia when that had already been ruled out for me.
Brianne: And when it’s untestable. Like there’s not markers that say that you have fibro, that’s not a thing.
Nicole: Exactly. It’s like they look for inflammation markers. They do the 18 trigger point where they’ll see if certain areas have inflammation. But there isn’t, it’s a process of elimination diagnosis in most cases. And he’s supposed to be this forefront specialist. Nope. So he just drops this bomb, bills me an extra bill, and then because I couldn’t initially afford that bill for a few weeks, I got blocked from seeing other specialists and follow-up because I had to pay back this guy who did this. And at this point, I’m more and more like, “What is wrong with this system?” I am coming in good faith. I’m paying my insurance. I’m following the procedure. You’re on the phone with insurance. You’re doing all the shit that comes with being a patient – sorry for swearing.
Brianne: No, no, it’s fine. I already did.
Nicole: [laughs] So that is a whole workload in and of itself. And you’re like, “I’m doing everything right, and the system is treating me like I’m this insane, needy individual who is just this suck on the system, and this drain, and a waste of energy.” And also growing up with the Grey’s Anatomy and the Dr. House and all of these doctors who will fight until they cure you. I’m just like, “What! What the hell is happening?”
Brianne: Yeah, where is that doctor? Like, I don’t know anybody who finds that person.
Nicole: I did now, but that’s the third or fourth act.
Brianne: Okay, perfect.
Nicole: So that’s kind of the long answer to your lyme disease question. And then we can get to the next turning point. But if you have another question, I’m happy to answer it.
Brianne: No. I think that’s good, because I was also going to ask if you had tapered off when you went off drugs. But you answered that in the course of it.
Nicole: There was no taper. There was a [snaps] cold turkey. I’ve had enough, no más. This is not happening.
Brianne: And then did you notice a pain impact of that? I mean, I would imagine that going off a bunch of drugs would make a big difference. But were you like, it’s much worse, or what happened?
Nicole: So one of them was an opiate, I was on tramadol, which is very strong, pretty high dosage daily. So that, the gabapentin, the other stuff, they all are basically combined as a numbing agent. So going off of everything, what I noticed was it wasn’t even that it was a new pain. It was that my old pain just amplified to this insane degree, and I kind of realized that my condition was just getting worse and worse. That no matter what medications they were giving me, that really wasn’t helping me. And I’m not just trying Western medicine, you know, especially working with my mom, working with naturopaths, I’m seeing chiropractors. I’m trying holistic and different… anything I can. And so I guess the second act comes when I somehow just push through this period, and this is a few months after I stop being on all the drugs. So I’m getting to a little bit of a better place, honestly just kind of by force of will, just by the fact that I have all these bills to pay. I’ve got student loans, I’ve got medical debt, and I have to have a job and a life. So whatever you’re dealing with you just kind of have to deal.
So I’m working two jobs, a day job in marketing and then also working at a restaurant. And one day I’m walking out and there’s this parking garage, a municipal parking garage right next to my restaurant, and I’ve walked through these doors like a thousand times, and it’s got those giant, like, two-ton sliding divorce and I’m walking through the first set, fine, the second set, the sensor fails when I’m halfway through. So the doors come together with me in the middle. And my friend is on my left-hand side, hers just lightly taps her. My door hits me so hard that this clerk who’s 30 feet away behind a solid wall comes running out because she thought somebody dropped machinery. And I was like, “Nope, that was the sound of your door hitting my body.” And so this two-ton door just crushes my shoulder. So I end up going to the hospital and they tell me everything from I have internal bruising to crushed muscles to bursitis to I don’t know what else they come up with. They do some x rays. They’re basically just like, “Meh, we don’t see anything, just kind of deal with it.” And I said “How do you not… This door just crushed my shoulder! I can barely move it. I am in agony. What?”
And so it kind of began again where I had to pay more attention to my health again. And again I feel like I’m kind of just shouting into the void. Just trying to be like, “I need help. I need help. What’s going on?” But I think this time the difference is I no longer was doubting myself or my sanity. I’m like, “Something’s up. This is just exacerbating it, something that exists.” So I’m kind of digging in more, and I’m refusing to be cowed by these doctors. And in the past, I had friends and family who were intervening in a way they thought was helpful, but they were kind of just like, “It seems like you’re having a meltdown,” and trying to be supportive, but also in a way gaslighting me the same way everybody else was. So it’s like I’m getting gaslit by all sides, and I just kind of was like, “All right, the shoulder just crushed my door. I probably should take a break from serving for awhile, because I can’t really hold up trays with this. I’m going to focus more on my day job, and that’s just how I’m gonna deal with it.” So for about a year, that’s just what I did. I switched to working marketing, I did some physical therapy for my shoulder. It got a little better, it still gave me a fair amount of pain and trouble, and it would kind of rotate between either my shoulder acting up for my hip acting up. But, you know, you just take it as it comes. That’s just what you have to do. And part of that is you end up with a strained muscle a lot or you get micro tears or you just get a lot of those little injuries because the area’s weaker, especially a joint like your shoulder.
So another year goes by after this door incident, and I am working at this agency as a project manager back in Connecticut, and I have an hour commute each way, which doesn’t really help with the hip thing. But, you know, you just do it. And one day I’m just standing in a Panera parking lot, not even walking. I’m just standing there and I hear [snaps] a pop and my leg went kind of numb. And I’m two minutes from home so I decide to drive home and that could have turned out so badly because my leg was unresponsive and it’s my right leg which you use to pump the brake. And I had to use my hand to kind of keep my leg muscles moving, just to get home. So I go to the hospital and they do x ray, an MRI, and they tell me that I tore my tendon, my gluteus medius tendon, in two places. And I tore my labrum, which is the cartilage that kind of holds your hip socket in place. They told me I tore that, and I was like “From what?! From standing in a parking lot? That doesn’t cause it.” And they said, “Oh, it’s because of your fibromyalgia.” And I was like… at this point I’ve got a pretty good base of medical knowledge from having seen every single specialist and just being that exposed to it. I was like, “I’m pretty sure fibromyalgia cannot tear your muscles and your cartilage. That’s the result of trauma or something else.” But yet again, they were basically like, “We’re the experts here.” So they just prescribe… I actually had an ortho look at me and he goes, “Meh, you’re out of my league. I don’t really know what to do with you.” So they prescribe physical therapy. And also all throughout this I keep hearing, and this genuinely pisses me off to this day, “You’re so young and pretty. It’s such a shame that you’re going through this.” And I’m like, “So if I wasn’t young or attractive, it’s okay?” What message are you sending your patients, men and women doctors are just commenting in a way that they clearly think is like, complimenting me. But I’m just like, “That’s kind of messed up, that you’re basically saying somebody who appears to be younger or more attractive deserves pain less. I don’t really get… healthcare’s weird. The system’s weird.”
So at this point, I don’t have a lot of faith in the system. I’m pretty much just like, “Alright…” So I end up having to quit that job because I can’t drive an hour each way on this leg, and I’m in so much pain. That was one of the most painful things I’ve ever gone through was having those tears in an area that’s already very painful. And, you know, I can barely walk, can barely move, doing really aggressive physical therapy to try to get back up. And after I quit that job, I decided to move to New York because I got a new job working in New York in Manhattan. And I commuted for the first three months from New Haven, and then I was like, “This is the worst. Three hour commute each way.”
Brianne: Yeah, that’s a long commute.
Nicole: I need to move. So this was about three and a half years ago. I decide to move to New York. So I’m in the Weill Cornell and New York Presbyterian systems, I hear they’re the best. And it’s kind of like… some progress, but more of the same. More of the same attitude, more of the same… I had a doctor at one point tell me “We’ve run a million-dollar workup on you between all of your different specialists. If there was something to have been found, we would have found it.” Which is such an egotistical attitude. So it’s kind of more of the same. The difference is this one guy, because I started to get headaches and I had never gotten headaches before. Even though I had experienced symptoms associated with headaches before, because I’m just special that. So I got this headache, and then I was at a work event with my friend and I just collapsed. I collapsed, she had to pick me up and take me to urgent care, and they sent me to the ER. And they did these brain scans, and then they discovered that I have severe severe migraines, and I also have a benign cyst that’s just chillin’ up in my brain.
They were like, “We’ll just have to get it scanned once a year to make sure it’s just hanging out there. But you’ve got an arachnoid cyst.” And I was like, “Cool, cool, cool, cool, cool, cool. This is great.” I guess my hip needed something else to kind of balance it out and the shoulder. So now we have the shoulder and the hip and this like, “Why not?” is kind of my attitude at this point.
Brianne: All the regions.
Nicole: Why not? Let’s just add more, let’s just keep it going. So this guy, though, is the first to say headache. And I remember him being like, “How has nobody suggested this before? Because so many of your symptoms fit this.” The allodynia, the fact that I apparently had something called aura, which is when you kind of see these little sparkly lights in the corner of your vision, and it’s associated with migraine, and just a lot of the symptoms that I had are headache associated. So that was another turning point because it was like, finally, I had a label given to me by a doctor with confidence. Because they were still telling me that they weren’t sure, fibromyalgia, maybe something else, maybe. The rheumatological autoimmune perspective, that was still very much murky. But finally they’re like, “Okay, you have severe migraines.” And they started treating me for that. That was a turning point. But the rest of the system, it was still kind of the same. It wasn’t very patient-first, doctors are just telling me how I’m feeling or how I’m responding and not listening to what I’m saying.
And everything changed. And I cannot sing the praises of NYU Langone enough. They changed my life. I think probably also because it was a teaching hospital. They tend to be more open. This is about two years ago. I’m having a flare up. I’m at home with my two roommates, and it’s like what you were saying earlier, you just know when you have the pain you can deal with. And then there’s the pain where you’re like, “Nope. Cannot. I cannot.” So they’re looking up hospitals nearby because I was like, “Frankly, I don’t really want to go to the hospital system I’m part of. I don’t want to go to Weill Cornell.” So they look up and they find this Cobble Hill that’s pretty nearby. It has good reviews and it’s a teaching hospital, we literally yelped it.
Brianne: Perfect. That’s a good thing about city living.
Nicole: Right? So that’s where we decided to go. And instantly I knew it was different because I walk in and all the waiting room chairs air comfortable. Which is such a huge thing that they’re actually thinking about the patients from the moment you walk in the door! There’s not really aggressive overhead lighting. Everybody was really pleasant and friendly. They expedited me so they could get me right in on this comfortable bed. With pillows, by the way, which is another thing, a lot of ERs don’t have pillows. And I found out from nurses who work in the ER that it’s because people steal them. So they tend to either run out of pillows or not have them. It’s a weird phenomenon, but I have learned, and this is my advice to anybody listening: Always bring a pillow if you have to go the ER or hospital because otherwise, you might just not have one. It’s such a crazy system that we’re in.
So they take me and I also have this rash, and it turns out it’s because I was using the heating pad too much for my pain. But I have this rash, I’m having this flare up. The doctor, this young doctor walks in, he turns to the nurse and he prescribed some type of opioid. And I said, to my friend because I don’t expect to be listened to, and I was like, “That doesn’t really work on me.” He turned to me and goes, “So what does?” I was so taken aback, my jaw dropped, because I had just not been asked that. He was like, “If you’re telling me that this does not work for you, what works for you?” And I think that was the moment that I was like, “Yeah, I’m going to switch to this system.”
Brianne: Yeah and it’s something that is so obvious. Without any other context, if you tell that story where you’re like, “Oh, a doctor did something and it wasn’t helpful. And so instead of saying something to him, I muttered to the side.” Someone who has no context for this, because I’ve had conversations this, will be like, “Well, that’s silly! Why didn’t you just tell them?” And you’re like, “Oh, thanks. Great question. I’ve never thought to just tell the doctor what was going on!”
Nicole: Yeah, and also at this point, my mistrust of the medical system understandably is pretty freaking high given everything I’ve been through. And also because of the fact, and I was partially getting a kick out of this too, that they kept trying to convince themselves it was all in my head. So whenever I’m in the hospital, they’re running a psych eval on me before they give me any drugs. And this one time, this doctor who my mom and I nicknamed Bitchy McPearls, because she was Bitchy McPearls. She was just very condescending and just steamrolled you and ignored you and was very dismissive. And I’ve also learned that as a patient, you have to use the big medical words. That’s the only way they’ll take you seriously, because you prove you know what you’re talking about. And she’s just talking over me, she orders this psych eval with another Bitchy McPearls who comes in, and I was like, “You know what? Fine.” So I’m like, “You want to talk about trauma? I will tell you.” And I list off five of the biggest traumas I’ve been through in my life. Like, “Here! Here you go. You’re welcome.” And afterwards, apparently she went out to my mom and she was like, “Is all of that true?” My mom was like, “Yeah.” And so then they’re like, “Oh, shit!” And then they loaded me up with all of the drugs in the world. They literally gave me, they discharged me with six different meds. And not the two actual supplements that I needed, because the reason I was in the hospital in the first place that time is because I had a magnesium and potassium deficiency in my system. And my nutrients were really low to the point they had to give me IV potassium, which I don’t recommend, it really stings. I had to have three bags of it. It was horrible.
Brianne: That sounds like a lot.
Nicole: So they discharged me with six drugs, but with no potassium or magnesium.
Brianne: Sure. To help you feel better.
Nicole: Right? This is Yale, by the way, which is supposed to be one of the best systems! Sorry. That was a flashback. That was my little rant. Just cause that infuriated me.
Brianne: Well, and to add to that aside, I think certainly with me and with most people that I’ve talked to, mo one’s being like, “Oh, no, my mental health is perfect!” They’re like, “Hey, certainly I can acknowledge this trauma or other mental health stuff in my past. And I can distinguish between that and nerve pain.” I can have both.
Nicole: Exactly. And you can acknowledge physiological pain is very much real. When your stress and anxiety and your emotional pain is worse, it feeds into your physical pain. So there’s absolutely a bridge. And we acknowledge that! To your point, it’s not like we’re denying that. We’re saying, “That’s true. But that does not negate the fact that this is also true. It’s not mutually exclusive.”
Brianne: No and also, okay I have one more thing to add to that, to go with psych evals. Also the one-page depression screener, which I forget what the questions are on it, but they’re the same as just actually being sick. It’s like… “I have trouble getting out of bed.”
Nicole: “I have trouble sleeping.” “I lay awake at night and think about things.”
Brianne: Yeah. Or like, “I don’t see a happy version of the future.” And you’re like, “Yes. I am reading as quite depressed right now. And certainly my mental health isn’t great because I can’t get out of bed and I don’t know why, but I know that it’s not caused by depression.”
Nicole: But to add to this and to complicate matters worse, I have anxiety and depression and PTSD. But I acknowledge all of those things. I was like, “I suffer from all of these things. They absolutely are contributing factors. They are not the only factor.” That’s pretty much just what you’re trying to say. Because mental health is still so stigmatized, and I have always owned it because I think it’s disgusting that people are stigmatized for having depression or having anxiety or having PTSD. I wear it on my sleeve. That’s what I mean when she asked about trauma. Like, “I will give you trauma!” I will tell you why I have PTSD. I will tell you about my abusive upbringing. I’ll tell you about how I was homeless. Go ahead! You want a psych eval? You want to do this one-page standard psych eval? I will go so extra because that’s what you deserve for doing this, basically. I kind of almost got a little petty enjoyment out of her going to my mom like, “Oh, is that true?” Maybe we shouldn’t treat the patient like shit. What an eye-opening consideration. So yeah.
Brianne: It’s so much. So then this other doctor tries to give you an opioid that doesn’t work, asks you what does.
Nicole: Asks what does. And this kinda blows my mind. And then he just talks to me, person to person. He’s like, “Okay…” It’s not just a standard “What are your symptoms, let me order the x rays.” He’s like, “Alright, you say that you have this chronic pain. When did that start? How does that manifest? Is that similar to how you’re feeling now?” He asked the different questions to actually try to get at the bottom of everything and not just address the topical rash. And I remember he turned to me and he goes, “I can tell that you’ve been through a lot and that you don’t have the diagnoses you need.” He was like, “I’m pretty sure this rash is just the heating pad, but basically using that as a pretext I can keep you here for a couple of days while we start to run some different tests on you.” So he did. He basically was like, “I’m 90% sure it’s nothing.” But I had to get a biopsy so they could check me out. They had me see a neurologist who, by the way, neurology and rheumatology were the two that I needed the most and were also the two specialties I had the most difficulty accessing because that’s our system. So I see this neurologist who backs up the diagnosis of headache, who says that there’s clearly some nerve pain going on with me and that is amplifying everything. And they start to get me in with the right specialists in NYU Langone, and that changed everything for me.
I can’t even describe how much… any time you go and I started seeing these different specialists in rheumatology. I have a GP. I have ortho. They listen to you. And you walk into the waiting room and there’s these big, comfy chairs. The aides will help walk you around, it’s just… they actually care about helping people in a way that exists in this corporate system. And so it was so powerful to me after everything I had been through to be part of that. And I credit them so much with changing my life, them and also being in therapy for two years now, the two combined. And also being validated and finally taken seriously, because that’s the biggest thing NYU Langone does is if you come to them as a patient, they don’t poke holes. They start by trying to address the problem. And they take you at your word. They’ll run the tests to back it up. But at one point a doctor goes to me, “I’m gonna be honest. You don’t present on paper the way you present in person. On paper most of your results look normal, but in person when I examine you, I can see how bad everything is.”
And for example, I don’t have any inflammation markers. I was rejected from the Yale rheumatology program because they were like, “You can’t possibly have an autoimmune. Your inflammation comes back normal.” But I exhibit symptoms of severe inflammation to the point that it will give me something called pleuritis, which the pleura is the coating around your lungs, it’s this gel around your lungs that protects it from your ribs. When you get pleuritis, it gets inflamed. So your ribs scrape up against your lungs and it sucks. Yeah, about as awful as it sounds. So I’m getting physical manifestations of inflammation. But previous doctors have been like, “Well, it can’t be.” So at this point, I’m starting to build out the team. They’re treating me regularly for headache and I see a rheumatologist who gives me the diagnosis after a few sessions, he goes, “I think you have both fibromyalgia and an underlying autoimmune condition. You have these couple of markers that people who have autoimmune test positive for. You have all the symptoms. We might never know what it is.” And 30% of all people who are diagnosed with autoimmune don’t get a more specific diagnosis.
So I’ve kind of had to come to terms with that. And my headaches are kind of getting worse, increasing in frequency. So as one thing is getting better, the other thing’s kind of getting worse. And I’m in physical therapy pretty much continuously for my shoulder and my hip. Just to keep those up to par, to be able to keep working. Because I’m working his entire time, I’m working at an agency, I’m working crazy hours, like seventy hours, and doing this. Because that’s just what we have to do, and that’s a whole other can of worms, by the way, is how health and career intersect and the emotional baggage that comes along with it, and having to prove yourself almost the same way you have to do for the medical system. You have to prove yourself more as a woman, you have to prove yourself more as a young person, and you have to prove yourself more as somebody with chronic health and pain, especially as somebody who doesn’t have that manifesting on their skin. If you don’t look sick, you’re not sick, right? So all of that stuff is happening. And then I get a 70-day migraine.
Brianne: That’s a long time.
Nicole: I can’t even. This was a year ago, and this happened right around New Year’s, too. And it was so bad. I can, like, barely function. I’m still working. Can barely function. I end up going, I end up seeing this headache specialist who does a dozen nerve blocker and botox injections in my skull and my spine and then sends me to the hospital to start this three-day treatment that is so intense they have to monitor your heart to make sure it doesn’t stop your heart. Because it’s something called DHE, dihydroergotamine. And it’s a vasoconstrictor. When you have a migraine, your blood vessels are going nuts and they’re super inflamed. And that’s also what’s causing that throbbing and that pain. So a vasoconstrictor reduces that down, but that’s constricting your blood vessels so they have to make sure that blood is still getting to your heart and you’re able to handle it. So they hook you up for three days and they bombard you with that and with these other drugs. And so you’re puking and miserable. And that’s how I broke my 70-day migraine!
Brianne: Yeah, like the treatment is also terrible.
Nicole: Yeah, but at least… and then I get discharged and this headache specialist, Dr Burke, who I cannot say enough about. He’s one of the best doctors I’ve ever met. And headache specialists, by the way, are really rare. There’s, like, 500 in the country because you have to do neurology and then you have to do two more years. So it’s hyper-specialized. And this guy, he just cares. He starts seeing me more regularly and he does integrated medicine. So now that I’ve proven that my system can take that DHE, he gets me a nasal spray version. But he’s like, “That’s not preventative. That’s just if it’s so bad you can’t deal with it.” But he also has me on… He changed my diet and I take three supplements every night. The trio for migraines. For anybody out there, it’s B2, magnesium and CoQ10. Those were the three and I took them every day and my migraine started to go down. I changed my diet, cut out a lot of sodium, and got more fresh air, and he worked with me on how to make those changes gradually. And now I get migraines once a month. And it is such a huge difference. So it’s always such a yoyo. One thing will be up and another thing will be down. So now my head and my migraine starts to go up, so of course, in the Lifetime movie of my life, that means that the hip or the shoulder has to start acting up, right? So migraines improving, everything’s on the up and up.
Another year goes by, this past year, and I’m starting to get into more of a rhythm where I’m doing counseling every week so that I can work through all the emotional stuff that goes along with dealing with this and create a support system and have a life and have a career. And things were starting to really click. And then this past winter, I had done physical therapy so that my shoulder and hip are now like, 95%. Even with my hip having been injured the way it was. I was able to run, to dance, to do full cardio, I had worked my way back up. And then this past January, I’m sweeping and [snaps] pop! the sound happens again. But my pain levels are so severe that I have to block them out to this crazy degree. That’s why they have me on such a because they think that I have this thing… I’m trying to remember what it’s called, some type of hypermyalgia, which basically means my nerve pain receptors amplify the pain that they’re feeling. So a touch feels like a hammer blow, which also plays into what we were talking about, the sensitivity. So the pain that I naturally feel, my body is just amplifying through my neural receptors which is just delightful. So I kind of have to block that out to be able to function. So for a week, I walked around on my leg because I just thought that I had a flare up again. I literally had my walls up so high, I didn’t realize that I had re-injured myself. But after a week, I was like, “Alright, something’s wrong.” And I said, “I’m gonna go to the ER. They’re going to put me on crutches and tell me to follow up with an ortho.” And that’s exactly what happened. So I went to the ER, they did the x ray, they put me on crutches, they send me to an ortho. She’s like, “I want to send you to an ortho surgeon.”
So I go to see an orthopedic surgeon. This was February of this past year and they look at the s rays and the MRI. And I’ll never forget this. The guy goes, “Oh, no wonder!” Because the first girl that I saw, the first orthopedic doctor that I saw who looks she’s 20! And I’m just like, “How are you an orthopedic surgeon?”
Brianne: Yeah, how did this happen?
Nicole: Yeah, shout out again, NYU Langone they’re awesome. So she sees me and she’s like, “Okay, you made your labral tear worse. Your cartilage tear is worse, and you re-tore your tendon in the same exact spot.”
Brianne: That’s so weird.
Nicole: Just from sweeping! Right? After being able to do full cardio, from sweeping. So then she sent me to the ortho surgeon, she ordered x rays, diagnostic. And he looks at it and he goes, “Oh, yeah. No wonder you keep injuring yourself.” And I go “What are you talking about?” He goes, “You have hip dysplasia.” And I said, “What does that mean?” And he shows me the x ray and the head of my femur, my leg bone, is very clearly not in the socket. And the first thing I’m thinking about is, how the hell did they not catch this two years ago when they had x rays and MRIs and they’re telling me that it’s all in my head and because of fibromyalgia, and it’s because my bone is not where it’s supposed to be! Like, are you kidding me?
Brianne: Yes. That is so enraging to hear. Like in general, not even just because of your prior injury. But when you’re like, “Hey, repeatedly, every medical professional. I have pain in this region, do you think there might be an explanation?” And they’re like, “No, definitely no explanation.”
Nicole: To actively gaslight you, yeah.To make you doubt your own sanity because their word is god.
Brianne: Yeah, on top of what you just said, which is with the previous injury the evidence was there. It’s not even that they didn’t look for it. There’s no way that it wouldn’t have presented. They just didn’t see it.
Nicole: But that’s the thing, I genuinely don’t know how. Because I’m not a doctor, but if you look at the x ray, there’s a clear gap of, like, that much. There’s, like, a few inches there, you just see the bone is not in the socket. And there’s just no way to miss that. That’s on the x ray, let alone the MRI that they also got. So the fact that they turned around and continued to treat me like that is infuriating to a degree that it’s hard to process. So I had to kind of work through that anger, too, and that impotence, at the system that we’re in. And the fact that you’re in so much medical debt because of these very people who are perpetuating this to you is even worse. I’m having to pay for the privilege of you ignoring me and gaslighting me and dehumanizing me and causing more pain because you won’t treat my actual problem. There’s an emotional toll that goes along with that, too. Being a patient, apart from the pain aspect, carries so much emotional baggage that you never expect until you have to deal with it. And you have to deal with a system, and I actually said this to my mom at one point. I was like, “I feel like health care is the only system in our country where…” You know, I work in marketing, so it’s supply and demand, right? The customer in the market. We are the customer, yet the market is not built for us. And that doesn’t exist anywhere else. The market serves the customer, the customer drives the market. This is the only area where the market drives it and pays no mind to however the hell the patient fits into it. But we’re still the ones paying and continuing it because you don’t have an alternative. And that’s kind of just crazy to think about in that way.
Brianne: Yeah, and also something that strikes me all the time and in your story is that it’s also not results driven. There is a really opacity to me about what success looks like in the medical industry. And I think whatever it is, because I honestly don’t know, whatever it is that they are counting as successful treatment is so obviously missing the mark on this chronic stuff. And one of the big problems is that there’s no feedback loop. So except for your GP, if you go back to the same GP, which I have abandoned at least two, they have no idea. So…
Nicole: So it’s funny that you bring up that point because actually… first, I want to make the disclaimer of I have friends who are doctors and who work in the industry. This is by no means a blanket condemnation, because I’ve got a lot of anger but it’s at the industry and at the system, not the people who work in that by and large. There are some exceptions. As you hear in my story. But what was interesting to me is I was told to my face by a counselor working in the field that the reason that they kept blocking my treatment is because I was labeled as a medical anomaly and had a million-dollar workup. Hospitals don’t want to be affiliated with me because I don’t count as a success. They can’t count me as somebody they could diagnose or label or put as a success or treat. So doctors and hospitals, they’re obviously that’s how they’re measured for success is their success ratio with patients. So they’re more willing to take on cases that are cut and dried and the complex Dr House cases like me, people don’t want to take us on. So that element is very much in play, and it’s driven a lot by insurance also. So that, and I’m aware of all this, so it’s kind of all coming to a head.
But that moment when he was just like, “Oh, yeah, no wonder you keep reinjuring yourself. It’s because your bone isn’t where it’s supposed to be. And it’s been like that since birth.” It was just such a… Are. You. Kidding. Me? I can’t. You feel so many emotions and a lot of relief and joy. And there’s this vindication. I felt so vindicated because after all of this, I was like, “I knew it wasn’t in my head! I knew my body! You made me doubt my mind, my sanity, my spirit, my endurance. But I was right! I was right. And I was right to dig in.” But at that same moment it’s heartbreaking, because how many people who didn’t have the support system I have, don’t have the inherent confidence and trust in myself that I have, the ability to speak in a way where I could represent myself clearly and talk in a way that gets me respected by the medical professionals. What about people who don’t have all those advantages or people who have language barriers, people who can’t afford it? This same process probably broke them, and that’s heartbreaking to me. And that’s also why I wanted to share my story with you and in these YouTube videos that I do and in any way that I can because the only way to prevent that is for us to talk about it and acknowledge the fact that this is a very real problem and that patients are unheard and we very much need to be… not even from a pride and respect perspective, but from a treatment perspective. If you had listened to me all those years ago, this could have been caught.
But then again, the flip side of that is I’m glad it was caught by the people it was because I don’t want anybody else doing my surgery. All those people who put me through that, I don’t want them responsible for this. So this doctor kind of says that to me and I’m just like, “Okay.” And he goes, “So, you know, that’s probably going to require two surgeries.” And in my head I’m going from people telling me that I have no markers and nothing wrong with my body to telling me I’m going to need two major surgeries and it’s a total whirlwind, you know? So then I see a second orthopedic surgeon who also looks like he’s 25 and I’m like, “What’s going on, NYU Langone? Like what fountain of youth secret wonder doctor program do you have? Because please continue.”
Brianne: Or like, what do you serve in your cafeteria, your staff cafeteria?
Nicole: [laughs] I’m picturing this magical Narnia place because you guys are all awesome. But he sees me for a session and he’s like, “Okay, you know, I think we should start with doing physical therapy and with this basically surgical injection.” And I said, “They’ve already tried both of those things.” And he goes, “Okay, then we’re going to do surgery, because you can’t be in this pain anymore.” And that was just another moment, like ahhh!
Brianne: You’re like, “What? Say that again?”
Nicole: He’s like, “You’re in too much pain.” And that was, by the way, what the first ortho said when she saw me. When I did the hip pop and they were following up from the ER and I see her, and even before she ordered the xrays and diagnostics, she goes, “A torn tendon and fibromyalgia and all of it should not be causing you this much pain.” She was like, “They’re bad, but not to the degree that I can see you are in.” And that’s why they ordered all this stuff. And that’s why they dug deeper. So I see the surgeon, the second guy, and he’s like, “Okay, you’re going to need two surgeries.” And typically they do surgeries either back to back in one sitting or they wait until you heal. They decided on a very unusual method for me. I got my first surgery and then a week and a half later I got the second one.
So the first surgery was an arthroscopic procedure to staple up my cartilage because tendons heal on their own depending on how bad it is, but cartilage doesn’t. So they had to go in and staple it up and arthroscopic is like they go in with this little camera. So that was considered more minor, like I was in and out the same day even though, you know, it’s still big scary surgery. And then I went home and recuperated for about two weeks and literally as I had just gotten off crutches and was able to walk again… Because mind you, the story I’m telling you, this is six months in New York in winter on crutches, working and getting around and dealing with the subway which is very not disability friendly. Like our public transportation is not great for that.
Brianne: I do not know what that’s like, although I did once spend a single day in New York City while I was using crutches and I got yelled at by strangers for taking too long on the stairs.
Nicole: I actually will say, New Yorkers get a bad rep, my experience was so positive on crutches. For the six months… Well I was on crutches for more than six months. But for the six months between when it first happened in January and my first surgery was in March and the second one was in April. So I guess a few months. But in the whole time I was on crutches, people gave up their seats on the subway for me. Strangers on the street walking by would see me go to leave a building and they’d just hold open the door for me and then keep going or give me a word of encouragement. Like New Yorkers were actually way friendly and supportive. It was more just the fact that New York, icy winter with a sidewalk on crutches does not mix well. So it’s like I’ve been on crutches and I’m a dancer and an athlete, so I’m so sick of it. I’m like, “I just want to move again.”
And so I have the first surgery, you know, painful but I heal. And then just as I’m walking again, the next day I have to go back into surgery and face the fact that I’m not going to walk for another like two or three months. And that’s again, that is honestly one of the hardest things about all of this. It’s not even just the physical carrying the pain. Dancing is just who I am. It’s like breathing. For me, dancing and writing are just the purest forms of expression that I have. And to be cut off from yourself and in a way where you can’t blame anybody externally because it’s your own body that you feel is betraying you. You carry a lot of resentment inward and that’s something you 100% have to work through.
And going to therapy helped me work through that, but that’s definitely part of all of this. You feel betrayed by your own body and it’s not anything you can control or influence or change. And for somebody like me who has PTSD, who has survived a lot of stuff, having that kind of control over my own body and my own identity is so important. So to have that stripped in a way you can’t fight and you have to make your peace with, that’s very much something that’s part of the struggle.
But so I’m about to go into the second surgery, and I have to be there at 5:00 AM and it’s blizzarding. So my two roommates who are just these wonderful people and they were for the first surgery. They bring me into the second one. And this one was scarier because I had to sign a living will and had to decide whether or not I want a DNR. And it’s very like you look at your own mortality, you know, this is a bigger procedure. The second procedure was a hip displacement, which means they go in and they saw through your femur, they cut and break and then reset your bone and put it in the socket. So it’s a pretty major surgery. And I go in and when I wake up, one of the first things that the nurses tell me is that I had lost too much blood in the surgery. So they’re trying to decide whether or not I have to go in the ICU. And I’m just like, that’s not how you want to wake up from your second major surgery in two weeks.
But that was the next turning point because then it’s like I have to learn how to walk again. And now I have staples in my hip and I have these titanium screws that are like this long. I’ve got four of them, kind of keeping them. And not only that, my hip is numb from the very top of my thigh to right above my hip, that whole area. I have no sensation there. It’s like if a limb was asleep, you know, but to a very radical degree. And as somebody who’s a dancer and an athlete, it’s weird. Your mind just skips over and it takes some getting used to. So it’s not even just physically learning how to walk. It’s adapting to this new almost alien thing in your own body. And you can feel the metal, your body’s like, “Foreign object! Foreign object! Foreign object!” There’s a weirdness and a creepiness to it and people don’t like to hear about that because it grosses them out. So you can’t really talk about it. So you’re like, “Cool, I can’t talk about this to anybody.”
Brianne: And they’re like, “Are you better now? Is your story from your surgery that it’s better now?” And you’re like, “Is that the only answer that I can give you? Because if that’s the only answer then yes, I am better now.”
Nicole: Pretty much. And I’m really lucky. I’ve got so many amazing friends in my life. They’ve been such an invaluable part of my support system. And part of it is because they’ll make fun of it. Like they won’t be precious about it and strangers will hear us interacting and will hear them calling me gimpy or something and will get offended. And I’m like, “No.” Because you have to laugh at it. You have to be able to do that. We have this running joke where I can predict the weather to an insane degree. Like when I wake up, before I’m even conscious, I can tell you if it’s going to snow, rain, be windy or be humid with total accuracy. Even when the weather forecast is off. And at first to my roommates, I said this and they kind of were like, “Okay, okay…” And then one day I’m like, “It’s gonna rain, take an umbrella.” And they’re like, clear skies, sunny forecast… It rains. And so they start to listen to me. So we developed this joke. They’re like, “It’s almost like you’ve got these X-Men gimp mutant powers.” They named me Storm Bones, because they’re like, “You can feel it in your books!” So they’ll be like, “Hey, Storm Bones, what’s the weather going to be? I need to know today.” And then they kind of told people in my office, so now people in my office too will be like, “Storm Bones, what’s the forecast?”
You run with it and you learn to get a sense of humor about it and you can’t be precious about it and you can’t just be like, “Oh, poor me.” You know? So I had to learn how to walk and I did physical therapy and I had… this happened in April and in July I knew I had to learn to walk by then because I was going to South Africa for two weeks for two of my best friends getting married. So I had two and a half months to relearn how to walk, like from scratch with this new everything. And I did. And now I just got… a couple of weeks ago, my PT told me that I can do full everything again. I can do cardio, I can work out, I don’t have any limitations. And that moment when I got off crutches for the first time since January, which that moment happened in June when I was able to stay on my own two feet again. That was like the Rocky moment, you know, I’ll never forget how amazing that felt and I’ll never take for granted the ability to walk under my own power ever again.
And so I’m at a point now where it’s like, do I have a lot of pain that I have to deal with? Yes. Do I have like six different conditions including weird neck ribs and an arachnoid cyst? Sure. But I have a support system. I have a therapist. I have both integrated medicine, like holistic and western. I do a mixture of supplements and changing my diet with some traditional medicine. I continue to do physical therapy and I talk to people. I talk about my condition. I don’t hide it. And actually when I was interviewing for this job, I went against the advice of my mom and my dad and a lot of friends and even my therapist because they told me to go for this job. And I was like, “No.” They told me to go for this job and I was like, “I can tell that that they’re just one of those jobs that aren’t going to be flexible because of my health condition and I’m not going to deal with that.” And they’re like, “You need money and you have to take the job.” And I was like, “No, I know my own worth.”
I know at this point how tangled up health can get in your career. I’ve lost multiple jobs because of health, even though, again, that’s illegal. But it happens. And there’s a stigma against you. They’re basically like, “Are you worth it? Are you worth it?” And you have to prove it so hard. And I decided, the same way I decided after that experience that I wasn’t going to ever be put through that dehumanizing medical experience again, I decided that I was never going to compromise my own internal balance and health and wellness for a career again. And if a career could not accept that this is part of what I have to deal with and that there are days I’m going to have to work from home, I’m going to have to be late because I’m going to physical therapy, I’m going to have to go to the doctor a couple of times a month. And I said that in my interviews. I was like, “If you cannot handle that, I don’t want to work for you.” And my mom and my therapist and everybody were like, “The ego on you!” They’re like “Walking into an interview and giving all these conditions.” And I said, “It’s because I know how it is.” I know how it is.
And the sad thing is that that is the predominant state out there for most people and for most of us who are dealing with this stuff, you’re kind of just expected to suck up, deal with it. You’re not given guidance. You’re given bills and you’re made to doubt your own emotional state. But they perpetrate all of that and then they’re like, “Why aren’t you just able to deal with it and also work a full-time job and do everything else that you have to do. Like I don’t understand what the problem is here.” So I did and now I’m at a small creative agency that is supportive. I go to physical therapy once or twice a week so I’m late. I have to work from home sometimes. I called in sick on Monday because I just had that pleuritis that I was telling you about earlier. I was like, “Well I’m having some trouble breathing and I’m in a lot of pain so I’m going to make the decision.”
You know, there are days that you’re in pain and you just go into work anyways and push through. There are days you can’t. It’s my decision and I cannot go into work and my bosses and my coworkers get it and they support me and if I have to duck out of work a couple hours early because I have a migraine or I need to finish up from home, they don’t hold that against me and they don’t count me as less for that. And that is so rare. And so I feel like I’m finally at this place of balance that I can help other people who are going through the situation and who are going through some of this stuff and try to be there and share my experience because it’s spanned so much. This lifetime movie that… The only way I can deal with the rage and the resentment and all of that is to shape that into changing the industry. I’m not going to be able to change the industry, but I can change the people who are affected by the industry and that’s how this is worth it. That’s how all of this bullshit is worth it to me.
Brianne: Yeah. Yes. [Exhales deeply]
Nicole: A lot, I know.
Brianne: No, it’s like there’s so much stuff in there that is awesome. Do you have a couple more minutes? I just want to be sensitive to time. Okay. So as long as you’re good to keep chatting for a little bit then I have a lot of different followups that I want to ask.
Nicole: Yeah. I’m curious to see what your folllowup is after I threw the four-act saga. By the way, can you see that being a movie? Like straight up.
Brianne: Oh yeah. And it’s the thing of like, there’s two pieces. So one, when you were talking at the beginning about like “I have to come to terms with the fact that I might never have a name for this” because that is a huge part of it. And then also at the end being like, “And in this case I have names for a lot of it now.” Like it’s about both. And I think sometimes outside observers will also be like, “Well if you just accept that it doesn’t have a name and this is just your life right now, you’re going to prevent yourself from finding a solution.” And what they don’t realize is that a lot of the time, getting a name for it is not actually a solution. And that should be the moral of the movie in my opinion.
Nicole: I agree beause that was actually, you know, I talked about turning points. One of the biggest turning points for me was this woman named Beth Waldman. She’s this tough, tough love, you know… She was a counselor who worked at a physical therapy center. And so this is back when I’m still living in Connecticut, I’m still kind of getting abused by the system, I’m on all these meds and I’m overwhelmed and being ignored. So one day I just kind of broke down crying on the table and I was like, “Nobody’s taking me seriously. Nobody’s helping me.” So the PT recommended I start seeing Beth and Beth was really the first counselor that I’d had specifically on chronic pain. And I have some inherent distrust of counselors because of another long story. But basically my sociopathic ex-stepfather used to pay off the therapist that he made me go to. So then whatever I said they would violate confidence and it would be shared. So let’s just say I had some trust issues.
Nicole: So she kind of forced me, and I’ll just never forget… At this point I was going down the rabbit hole of chasing for a cure, of a diagnosis. I’m seeing the most obscure specialists. Going down the Internet, anything. You’re talking to a friend of a friend who had this mysterious disease and it turns out to be this and it was iron poisoning or it was lead poisoning or it was this or it was this. Everything… or like, it was because of my time in China. So much that you drive yourself into a frenzy and you fixate on this idea that if I can only put a label on it, A they’ll take me seriously. But B, that means there’ll be a treatment and a cure. And I’ll know. It’s the not knowing that eats at you. Right? So that was driving me and Beth was the one who was like, “This is going to be really hard for you to hear, but you might not ever have a label. You might not ever get those answers that you want and that’s something you’re going to accept.”
And I flipped out on her because I was like, “You’re asking me to accept the fact that every single day for the rest of my life, I’m going to wake up in pain before I’m even conscious. The first thing I’m going to know is pain. And that’s there. And you’re telling me that there’s not like a magic pill. There’s not a treatment, there’s not a hope that eventually that will go away or change. That is my reality. And you expect me to just accept that. Hell no.” So it took months. It’s not an overnight thing. It took a lot of working through the stages of grief and denial and anger and working through acceptance. And at one point she tells me, and again, having anxiety also feeds into this because not knowing is making that worse. So she told me one day, “You take a hula hoop, hold it over your head and then drop it. Everything inside the hula hoop you can control. Everything outside the hula hoop you have no control over. Once you accept that, that’s kind of the anchor for you because that’s the starting point where you accept what your limits are and you see how far you can push them and where there’s still hope.”
So it’s basically adjusting mentally from, “I have to find a treatment” to “I might not find a treatment” to “I’m in this balanced place where I can hope that maybe someday I’ll get labels or advancement, but accept that that might not be my case.” And that’s a very tricky tightrope to walk. And I’m glad you raised that point because that’s one of the hardest things we have to deal with and it’s so unspoken. It really is, and nobody tells you any of this. Nobody braces you for any of this and you’re just being bombarded with so many emotions as you’re also making physical changes to your life because of whatever conditions. And so being asked to accept that… I also think you feel kind of like you’re being asked to compromise part of yourself because you’re being asked to accept that yes, my body’s betraying me.
I keep using the word betrayed because that’s how it feels. Like, yes, it is my own body. This is not caused by anything or anyone else. That’s what’s happening. My body, I have lost control over my body and that is the piece that’s so hard to accept, especially for PTSD and anxiety. I do not have control over my body. And not only do I not have control, I have to accept that and find a way to live with it and continue to search for treatment, but not get lost in it and not fixate and not hang my hopes and have hope but don’t have hope. Be pragmatic, but don’t be pragmatic. And you literally have to walk this razor-thin tight rope emotionally and unless you have the right support and the right people checking you and being honest with you.
Because it is painful and you are going to be angry and you are going to flip out and you’re going to take it out. And that’s one of the things, and I keep saying things that are hardest, but one of the things that for me personally was the hardest is I never want my pain to define me. Like when you’re in pain… a therapist once called it the wounded animal syndrome. When you’re in chronic pain, you just, you lash out when you’re in pain, that’s how you are. And if you have chronic pain, when there’s an emergency situation, your body goes into fight or flight. Like the moms will lift the car or something. If you have chronic pain, your body is actually constantly in fight or flight mode. So your systems are constantly on overdrive, which is just taxing everything and making everything worse. So you’re always almost being pushed to extremes.
But being asked to walk back from that ledge and find balance amongst that extreme and you have to do all of it in a way where in a split second if somebody is an asshole to you or you’re at work and you just want to scream… You can’t because you know that’s your pain speaking and you don’t want to take it out on people. So you almost have to watch yourself. You build a layer that’s just checking yourself where you’re like, “I refuse to let this pain define me and make me bitter.” Or maybe you resent the people around you that are healthy and young or like resent your friends or resent the fact that you can’t have a normal dating life because it involves way trickier conversations, you know? So yeah, all of that comes along with it. And I think that one of the most important thing you can do as somebody with chronic pain is to find that balance and to find that acceptance and to go through grief, you have to go through the stages of grief. That’s the only way you’re going to deal with it.
Brianne: Yeah. And I think that’s what can we really interesting about the therapy element. Like I agree, I think therapy is super helpful and I’ve talked to lots of people who have found therapy to be super helpful. But also the place for it is really important because if you go that first time or even that fifth or that 10th time and they’re like, “This person is a hypochondriac and they’re a drug seeker, we’re going to send them to therapy.” If you go to a therapist who’s trying to treat you for malingering and being a drug addict, it’s not going to be a positive therapy experience. Whereas if you go to a therapist and you’re like, “I need to come to terms with the fact that my body is not what I expected my body to do at 25 or 30 or whatever.” Like that is so important and powerful and it could even be the same person but it’s that intake process. Those are really different things because one of them is acceptance and one of them is just formalizing that gaslighting process.
Nicole: Yeah. One of them is coming from a place of actually trying to solve the problem. The other one is coming from a place of having already defined the problem that you’re going to solve before you do the research. And with my job it’s like that just doesn’t make sense. Or even from scientific method, you can’t draw a conclusion without the research, without the testing. You’re coming in here with a foregone conclusion. Then how are you going to be able to treat me effectively? And for me too, I have such trust issues. Accepting counseling was like, it took a lot. And I have this badass counselor now that’s actually right before this I had the session and she’s this like tough love mama bear. She’ll check me, but she cares. She cares and she goes above and beyond and she’ll stay extra time and she’ll talk to my family and she’ll do things that are not in her job description.
So those people are out there and that’s who you have to find, because they’re the ones who don’t just focus on pain too. They’ll be like, “All right, how’s your love life? How’s your work life? Are you overextended? When’s the last time you took a vacation?” Like they will check in on your overall wellbeing. Because they realize that health touches upon everything. And one of the biggest struggles I’ve had, and I just said this, was to not be defined by my pain. And I don’t just mean that in the way I treat people. I mean in the way that I was perceived, because for years I was just perceived as the sick girl because I was literally having meltdowns on social media where I was posting videos crying, just being like, “I just need someone to help me! I feel like I’m going insane. I just need help.” And I would post these videos and friends would get concerned or people would just be like, “It’s all in your head.” And so there was this perception of me as a sick girl.
And then at jobs, because I’m getting these torn tendons and all of this stuff at jobs that I’m losing or that I’m getting fired, because I’m now perceived as lesser or I’m this sick girl. When that defines your identity, then you start to define yourself as that and then everything becomes about that which is the exact opposite of what needs happen. You need to accept that health is a critical part of your life, but it is not the defining part of your life. There’s no single characteristic or identity that should define you. You are greater than the sum of your parts, you know, it’s not just this one aspect. So that’s almost the second half of the acceptance and the grief that we were talking about when longterm you might not get a label, is then turning around and also doing that.
Brianne: Yeah and I think something that really speaks to me about that. I think about it a lot because of the internet and the nature of chronic illness on the internet. You just touched on it a little bit but there are some pretty difficult toxic places where I don’t… I mean I recently used the term competitively depressing to somebody trying to describe them because they can turn into these pile-ons and it’s so hard because you don’t have a place to let it out and it needs to get out. But I think part of it is because we’re missing this idea of what it looks like to build a life with chronic illness. And so this was going to be… The shape of one of my questions was about fitting in work, which you have talked about a lot but it’s a huge question because I think a lot of people have trouble even imagining what accommodations they would need or what it would look like to have a work life that didn’t feel like it was at the expense of their health. And we don’t have models for that. And that matters
Nicole: 100% matters. That’s something that I love to be able to do for people because you want to know what it is? Wand to know what the secret to that is?
Nicole: Drawing those lines for yourself before you start a new job. Ask yourself, “What do I need? Do I need to go to physical therapy? Do I need to have multiple doctor’s appointments? Do I need to say that I will only work 40 hours and occasionally I can work 50 hours but only once every four weeks?” Set your limits, like literally define yourself and break that down into nice haves versus must haves. Like treat it as an exercise. And then that’s your position. And then when you go into an interview, you ask questions and you’re open. And that takes, again my therapist and mom were calling it ego. But you have to have confidence that what you can offer is worth it and you’ve got to be able to sell that.
So you could go in from the jump with your interview or your job and be like, “This is what I need. Honestly. Can you deliver?” And if they say yes and they can, great. If they say yes and they don’t, then it’s on you to be like, “I am going to make a change.” And I have had a few times with all this career… It hasn’t been easy. There’s been gaps of employment of a few months because I will leave a job because they’re working me 70 or 80 hours and I’m like, “This is not sustainable.” And honestly, it’s drawing that plan, but also defining that line for yourself when you ask yourself at what cost? Like I am maintaining this job at what cost to myself? And when you can’t answer that question, that’s when you know it’s time for a change.
And when you’re trying to make a change, go in knowing what you absolutely need and what you can’t compromise on and don’t be apologetic about the fact that you need these concessions because that’s really what it is. And if you believe you’re worth it, they’ll believe you’re worth it. And if they don’t, that’s not somewhere you want to be anyways. That’s the secret. It really is. It’s just coming in with a clear sense of your identity and your needs and refusing to compromise them. And also identify what’s that red line that once that is crossed… Is it working too many hours? Is it a hostile work environment? Is it being interrupted during doctor’s appointments? Because all of those happened to me. Like my team will be slacking me and texting me literally at the doctor’s office and I’m just like, “What are those lines?” And then how many of those flags are you willing to tolerate?
And if you stop and you take a look and there’s been like five of those flags that you just let go by, then it’s time to ask the hard question. And that can be terrifying because facing unemployment, especially with medical bills and knowing you have to continue to get care, that’s a decision that is a nightmare decision that’s horrifying to make. And I’ve had to make that decision multiple times and I always chose my health and that’s honestly how I got here. Right now my title is, I’m the senior project manager at a successful small agency and I have a successful career that I’ve built. It’s because of that. It’s because I chose my health over my career, but refused to let my health define me. And that’s an insanely difficult thing to manage because we’re not given guidance in any way, the system itself isn’t guiding us. Pop culture misrepresents us. This is a rant I’ll get on sometimes, but in pop culture we’re either like Fault In Our Stars, everybody’s dying and in love or it’s humorous and it’s mocking it. And what it should be is it’s rainy and my hip hurts and I have to go stand in line at the DMV. That’s our reality.
Brianne: Like, doing it anyway or not able to do it right now.
Nicole: Yeah, it’s the small things. It’s those small beats. Or just literally I’m about to go to my friend’s party that I really want to go to, but I am exhausted. Is this going to negatively affect my health to the degree that I’m going to feel it tomorrow? And if so, is this a social obligation I have to miss out on and then that carries on that you don’t want to feel that missing out. You don’t want to feel it, but you have to accept the limits of your body, so it’s constantly almost like negotiating with yourself and reevaluating and pushing yourself and seeing when you’re pushing too far. I think that’s the hardest thing that I would ask a patient to do. But it is push yourself past your limits because only when you know those limits and what is past can you set that framework for yourself and create that identity where you’re like “This is who I am. I am not compromising it. You can’t either.” And that’s kind of how you have to do it.
Brianne: Yeah, no I love it. I love it. And I love both sides of it. Because I think it was implicit in what you said about like, “I’ll work 40 hours or sometimes I’ll work 50.” One of the things that I know for some people can feel impossible, and it also depends on their work history or your work history, is being able to also confidently make the list of how you provide value. Right? And so like to me, I know for a fact because I’ve just always been like this and I think it’s because my body has always been a little bit unreliable. Like I always am able to do things faster than other people when my body is working. That’s just a feature of my body. I take tests faster, I write essays faster, like whatever it is, I do it faster. And so if you as an employer are going to measure my productivity in hours, then we are going to have a mismatch. And so that is still something that I don’t fully know how to capture. And I had already started doing a lot more contract work because it’s easier to bill on deliverables for me than to bill on hours. But like okay, if someone has not had an early career history that sets them up to make those negotiations and they’re like, “Oh, I’ve only ever done hourly work.” And the problem with hourly work is that you have certain hours. Like it doesn’t fit this model at all.
Nicole: To your point, I was on that model. I was a freelancer for a while. I did contract work so I was on hourly and that’s when I had to keep compromising and the health and it just kept becoming an issue. And you have to kind of either make the change in your career or make the change in who the person is that you’re working with. Because if an hourly model isn’t working, then you have to either switch to a retainer or switch to something else and if they won’t do that, then you don’t work with them. And that is terrifying.
Brianne: Yeah, it’s hard!
Nicole: You need the clients, you need the business, you need the income.
Brianne: Or the insurance in a lot of cases.
Nicole: Oh yeah, and the insurance, you need all of that. But the flip side is if you give an inch, it defines you in the most negative way. Then you are actively hurting yourself and making yourself sicker by not treating yourself with the respect you deserve. By not realizing, “You know what? I can’t do hourly. If this is how I’m the most productive, I’m going to create my own business model. And when I go to pitch new clients, that’s what I’m going to pitch them on and I’m going to show them the results and I’m going to show them what I can still achieve and it might work and it might not.” And there might be some trial and error and there might be a few months of unemployment.
And for some people that’s like almost impossible. Like I was living paycheck to paycheck. It’s not like I had a comfortable margin when I’m going without income. Like I’m living paycheck to paycheck. My friends did gofundmes to help me pay my medical bills. I’ve got amazing people in my life. But it is terrifying and exhausting and heartbreaking. It’s heartbreaking because you’re like, “This is the industry that’s supposed to be helping me and instead it’s making my life so much worse. And now I have to turn around to find a way to deal with this job and to prove myself. I have to prove myself and to prove that I can still be an asset to you even though you look at me and you only see the flaws and the health. And I have to work three times as hard to prove it.”
And so to your point, that is an impossible situation that you are being in. How do you exit that situation by saying enough is enough? You have to reclaim your territory and that is at the end of the day you are worth it. Like that’s what you have to realize. At the end of the day I’m worth it. If it means making a big change in my career, if it means turning down the job that everybody’s telling me it’s insane to turn down. Like one of the agencies that I left, I ran the accounts for Bud Light and Michelob Ultra for social media. Like that’s a huge stepping stone. And I met all these people. That would have been an amazing career to sustain. The pace was not sustainable and I couldn’t do it.
So I made the decision and people thought I was crazy because I didn’t have an alternative job and that was my dream job and it was one of the hardest things to do was to decide to leave. But I couldn’t live with myself if I didn’t. You deserve the best quality of life. At the end of the day, that’s a realization. If we had to put a moral of the story of this movie, we deserve the best quality of life that we can get. That means we have to fight for it. To get to that quality of life, you have to make sacrifices. You have to get your heart broken. You have to risk everything. Change your career, change everything. But you do it because you know what? We’re worth it.
So that would be my pep talk to you because clearly you’re smart and well spoken and I can tell that I’m sure you’re very, very good at your job. And to the people who are listening that might not have the same job experience, they might not have that same flexibility, I’m not saying it’s easy, but we’re here. You know, like I’ve always wanted to build more of a network and a community of us to do this, to share our stories, to support each other so that when that happens you can come to us and be like, “Hey, do you have any job leads?” Or, “Hey, can I just vent to you, to somebody else who gets it?” Because there’s such a difference between talking especially to somebody else who’s young and suffering. And for me in particular, there is a stigma if you don’t look ill. People do think to a degree you’re making it up or you’re faking it or it’s not as bad. So there’s almost that kind of layer to navigate. But you really do have to make the decision to put yourself first. And that can be hard, but you have to do it because otherwise your quality of life is not what it ever could be.
Brianne: And I love also, because I get really annoyed at some of the warrior culture within chronic illness, but that is something worth fighting for. Balance isn’t the word that I would use in this specific case, but quality of life you could say. That’s it. Fight for quality of life, which again, I know depending on where you are, depending on what’s flaring, that can be really hard. But it’s not like… Don’t fight for a super career, fight for a purpose, to have a purpose. And for some people they find that in their work and for some people their work is something that is easy and restful and they have a purpose somewhere else. But that is a thing that feels like it gets lost a lot. And that’s what’s tied up in this, take care of yourself so that you can feed yourself.
Nicole: So that you can take care of others and so you can have a life. And the other side of this that people don’t talk about is, to me empathy is rooted in suffering and shared suffering. And as heartbreaking as all of my experiences, and I’ve told you like a 10th of the traumas cause this Lifetime movie would be like five hours.
Brianne: It’s a miniseries.
Nicole: Yeah, it’s a miniseries. For a very long time I had a father figure who tried to break my faith in people and my optimism and he wanted me to become bitter and sharp and I refused. I always believed in the best of people and then to have endured and survived all that and start to get sick… There is this kind of like, “Are you kidding me?” It’s just more suffering. And I fixated on that for a while too, which was part of the problem. You’re kind of like, there’s this sense of “why me” and the sense of like “it’s unfair!” Like you feel like a kid again and you’re like, “This is not fair. I have no say in this and this is uprooting and changing everything and people are acting like I have some kind of control.”
Because you will lose friends who get mad at you for bailing on engagements or who think that you’re exaggerating or I had roommates who think that I was just exaggerating so I wouldn’t have to do certain chores. And legitimately people think like that and you can’t get lost in that and you have to instead realize that… What I realized is because I suffer, I can relate to so many more people. Because I’ve been homeless, because I’ve survived domestic abuse and physical and mental and emotional abuse, because I’ve been gaslighted by the system, because I live with chronic pain and PTSD and anxiety and depression. I could so easily look at all of that and just fall into it and then it would get worse because that feeds your pain. Emotional pain feeds your physical and mental pain and then it becomes this horrible cycle that you cannot break.
The only way to break it is to realize that… This is going to sound so cliche, but it’s only by experiencing the bitter that you can enjoy the sweet. Like I appreciate life so much more. I appreciate just walking down the street. When I’m able to just grab a drink with my friends and sit on a stool without being in so much pain I can’t focus. Those little beats that you find and the people who you can relate to and whose lives you can touch and shape because they’re going through something that you have gone through, like shared experience. Only people like us who experience chronic pain can really ever appreciate the opposite of that. We can appreciate joy better than anybody else because we know everything that goes along with it and we know the cost that comes with it. So we have that empowerment and I agree that sometimes the warrior culture can be a little bit much, but I think on the flip side, it’s less of a warrior and it’s more like I’m not a survivor, I’m a conqueror.
I am not somebody who is just surviving this. I am conquering my pain, I am conquering my problems. I am not letting my suffering define me negatively, if anything it’s defining me more positively because it’s just spreading my empathy. And once I shifted emotionally to that, which was about a year or two ago, that’s honestly along with the medical changes, that’s when the differences started to happen because I was less resentful of my friends. I was less “why me” and more like, “Okay, how can I help others now? This is happening to me, it happens to other people who don’t have the advantages and support system I do. How do I change this?” And I’m somebody who always believes in change and believes in positively helping each other and having a community.
So when it became more of a, “All right, this is part of my reality. How do I make it a better part of somebody else’s reality?” It gives a cause and a purpose and you don’t just feel like you’re suffering for nothing, which at the end of the day, that’s what each of us needs to find. Like what do you have that justifies what you’re going through. Because you don’t have any control over it, but you still need justification. You need to feel like it’s worth it. Like you’re not going through this crap sandwich for nothing. You’re not in this nightmare swamp for nothing, with no guidance, shouting for help. There’s a purpose. And whatever that purpose is, you have to find it. And then once you find it, you’ll get that identity. You’ll be able to draw those lines, you’ll be able to go with confidence, you’ll be able to make those changes. And that’s all a process and it takes time. But the more people like you and I can talk about this and support each other, the easier it’ll get for other people. And I really do believe that.
Brianne: Yeah, I do too. And an expression that I saw someone use a while ago, a random person when talking about childhood trauma, was just forged by fire. Like, “I was forged by fire.” And I was like, “Oh my god, I relate to that so much.” Because I mentioned this before, possibly before the recording started, but I started a storytelling event in Toronto with two other people, but it’s called Stories We Don’t Tell. And the whole idea was when something happens to you that is hard and you don’t have the tools to talk about, and especially when you’re young and your peers don’t have the capacity to empathize with.
Nicole: And probably stigmatizes you, and so does society.
Brianne: Yeah. One of the pains of that is just that you can’t talk about it because starting to talk about it opens up so many other conversations that you don’t want to have. And if you can’t find it mirrored somewhere, you’re like, “Am I the only person who’s ever gone through this?” And the answer is probably no, but…
Nicole: You can’t see it.
Brianne: Yeah. Because of that, it’s not anywhere. And I was like, “Okay, we’re going to…” One of the easy examples is just when I was in college, my mom had cancer. And then after she went into remission, my dad was diagnosed with Alzheimer’s disease and it was like, “I don’t know anybody who’s gone through this.” And as it turned out, at least on the cancer side, I did. And none of us were talking about it. And so we missed out on this opportunity to just support each other because it was too hard to even bridge that gap. And so I was like, “Okay, we’re going to make something that is just for this.” And so from that perspective… Well within my own peer groups, I certainly am not the youngest person to ever lose a parent, but within my own peer group I was. And it’s like, “Okay, I can turn this around into something that will impact people in the future.” And I also feel that way now with this, I’m like, “Okay, I was in a really bad flare last year and now I have the capacity to collect these stories and share these stories.” And I don’t otherwise have a dog in this race… I don’t know what a good expression is. Like I don’t have an agenda.
Nicole: A horse in the race?
Brianne: Yeah, that’s probably a better race.
Nicole: Your agenda is to help people. And I think what you’re doing is amazing and especially after hearing some of your own story, I can imagine that was not easy for you. But to me storytelling has such a vital role in our society, and then specifically in this. And it’s funny to me that you said that quote. I have two quotes that I kind of associate with this and one is “the hardest steel is forged by the hottest flame.” And the second is actually a lyric from a song that goes, “I looked my demons in the eyes, laid bare my chest, said ‘do your best to destroy me. You see, I’ve been to hell and back so many times. I must admit you kind of bore me.'” You’re kind of like “what now?” Like, “Go ahead! Throw it at me!” Because there’s almost this like, “I can do anything.” Like if I can have chronic pain and go about my day and have a family and have a life and have a relationship and have all of these things. And I can and I am and I’m doing it.
We have to almost stop and realize how freaking amazing that is. That takes a strength of spirit that is just beyond. Like there is a strength there. And that strength, that’s exactly what you’re talking about, we can’t always find it. So we have to borrow it sometimes or be lent from other places and when you don’t know where to look, all you can see is a lack of your own strength and not how being part of a community means you don’t always have to be strong. And that’s one of the biggest things that I want to say here is it’s not always going to be easy. You’re not always going to be strong. I have days where I will spiral or I’ll just get upset or I’ll get angry. But instead of fighting it, I let it happen. I’ll cry it out. I’ll do whatever I need to do because you have to acknowledge that that’s part of it.
And I have a phoenix tattooed on my hip that I got when I was 19. Not only because I’m a huge mythology nerd, and definitely a little bit of a pyro, and red and orange are my favorite colors. But to me there’s something really powerful about the concept that a phoenix may be killed or maybe die but they’re always reborn from their ashes. Like you always have another chance. There’s always another path. There’s always another way. And that brings it back to what we were talking about earlier about making these life-changing career-altering decisions or setting that identity for yourself or refusing to compromise. That’s part of all of this.
So it does, it all ties together and just having this conversation between the two of us, somebody else who can relate, who gets it as you’re talking, they’re like “yes!” And they’re asking these questions, and it’s so sad that this is this rare. This should not be this small. This should be something that’s broadcast on every network, and not because I think, “Oh yeah, we should be famous. We’re great at this.” But because we want to help people. We want to reach so many people. There’s such a gap and there’s such a lack, and I’ll send you the link to a couple of the videos that I made that I reference, but people who I barely know messaged me and they were like, “You know what? I was sitting there and feeling sorry for myself and being angry at my friend and after watching your video I was reminded of how badass I am.” That’s the biggest reward I could possibly ask for. And I’ve gotten a few of those notes and that is like, that’s the moment when you’re like, “Yeah, there is a need. Nobody else is filling it. So why not us?”
Like basically if nobody else is going to step up to help the patients, guess what? We have to help each other. We know the system’s not going to help us. We know this society views us in a certain way and expects us to just deal with our problems, as we can see in politics and the way healthcare is politicized, it’s become this hot button issue instead of what it is, which is something that affects people’s actual lives. So it’s kind of like if you don’t, then who will? Like if you don’t do this podcast, this storytelling series, who will? And so I think that there’s something really powerful in the story that you shared and in the fact that you’re able to go and talk to other people about it and help them through it. That makes it worth it.
Brianne: Yeah. Yeah. And that’s, that’s exactly it. It’s like, “Okay, now I know about this.” Now I know about this and if I can talk to people who have had experiences that are very different from mine, and I can just know the very basic level stuff of like: don’t ask them if they’ve tried a thing because you think it might help, just ask them what they’ve tried. And there’s such little things that you can do that you only know are different from having been in it.
Nicole: Yeah exactly. And that brings us back full circle to the fuck yoga..
Brianne: Oh my god. Yeah, exactly. Perfect. I think that’s a good place to end the recording.
Nicole: [laughs] Yeah I agree. It felt full circle right there.
Brianne: Fuck yoga.
Thank you for listening to episode 14 of No End In Sight! In the next week or so I have interviews booked with people living with a number of diagnoses that we haven’t covered yet, so I’m excited to share those with you soon. Make sure you subscribe on iTunes or Stitcher or wherever you get your podcasts.
I just made a dedicated instagram account for the show if you want to give it a follow. Right now I’m posting about all of our back episodes with notable quotes and other details, and I’m sure it will grow and evolve as I get caught up. You can find it @no.end.in.sight.pod.
And don’t forget I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s pretty small right now, but I’d love it to become a place where we share resources about building a business while prioritizing our health.
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. I just started working on my winter patterns, and I’d love it if you checked us out at digitalartisanal.com.