Kelly Fullerton talks Ehlers-Danlos Syndrome, the mental side of chronic illness, and throwing a chemo party.
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Transcript
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Today I’m talking to Kelly Fullerton about a whole lot of things. Kelly has Ehlers-Danlos syndrome, and we talked about so many different parts of life with chronic illness. There’s a little bit of misdiagnosis, a little bit of sharing your experience with friends and family, a little bit of changing the way you anticipate symptoms, and even a chemo party for good measure.
You’ll hear Kelly’s dogs in the background a few times, which might be accompanied by a not-so-elegant sound jump. I cut out a few interruptions but I am still definitely not a professional sound editor. Thanks again for your patience while I learn about the production side of things.
This is also my tenth official episode and I’m very excited about it! When I recorded my first couple interviews a year ago now, I wasn’t sure if I’d be able to find more than about five people, but here we are! I’m going to keep releasing this as long as I have people to talk to, so if you’d like to share your story then please get in touch! Of if you know someone who might like to share their story with me, please feel free to share this with them. That’s a lot of shares. There’s a super simple signup form when you head to NoEndInSight.co and click Share Your Story.
And 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.
[guitar riff]
Brianne: So I like to start by asking people about their health as a kid. So were you a healthy kid or do you have any kind of older memories? Even if you’ve re contextualized them a little bit in the present?
Kelly: I listened to your recording and totally resonated with the, I didn’t know that I was a sick kid. How do you know that what you’re experiencing is abnormal? I played a lot of sports. I was a total jock and fought through pain that I thought was normal. I constantly was wearing braces, like braces on my wrist, on knees and ankles. And if I looked around, I guess I could have noticed that none of the other kids were wearing these things. I played basketball, that was one of my biggest sports, and I would constantly get my fingers jammed, which people get fingers jammed, but I would get them all the time, and then I’d pop it out and keep playing. Well, subluxations are one of my main issues right now, and that makes a lot of sense. So I also remember my mom saying that as a baby, I was super flexible and the doctor was like, “Oh, look, you can totally do x y and z with your baby. She’s just really flexible.”
Brianne: What fun!
Kelly: Cool. Turns out, hypermobility is one of the main issues that I have and feeds into that subluxation and a lot of other things that I have. So, there’s different things in the past that I can point to now. But it wasn’t until high school, my sophomore year of high school, where I was playing a varsity tennis match. And I defaulted the match because I was in too much pain and I was too tired that I couldn’t continue.
Brianne: And that would be… yeah, I can imagine being young that that would be just an unreal thing to do, so you wouldn’t even expect that that was an option. Almost.
Kelly: Right! But like, I’m sorry I just can’t finish. And it was a doubles match, which to me, that was silly. Because it was even less effort than what I was used to. And with all the different sports I played, I grew up playing tennis during the summer. I’d play tennis, I’d play golf, I was on the swim team. I would sometimes do all three in the same day. And I couldn’t play one doubles tennis match one day and finish it? That was when my mom was like, “Okay, maybe you’re not just being overly dramatic. Maybe let’s go to the doctor.”
Brianne: Had it been kind of building up to that point, so you’d been participating in sports sometimes you were pretty tired, but you always fought through it. And so this was kind of, it wasn’t out of nowhere.
Kelly: No, I was always in a lot of pain, always really tired. But I also was, my height that I am now, 5’6” almost when I was 11. And so doctors were like, “Meh, growing pains.”
Brianne: Sure, sure.
Kelly: “She’s just, she’s just tired from growing. She’s just tired, she’s a kid, she’s doing a lot.” Because I was over exerting myself all the time. I love the term now, shoulding myself. Like “I should… fill in the blank.”
Brianne: Yeah.
Kelly: And I was doing that as a kid all the time. I should be able to fill in the blank. And I mean up until, like, three years ago when my doctor was like “at this point with your health,” when I actually got my diagnosis three years ago, so there were 14 years in there where I did not have a diagnosis, “you shouldn’t be walking more than five minutes a day.”
Brianne: That’s a pretty dramatic…
Kelly: And I was trying to ski, so I was like, “Oh, puts things in perspective. A little.”
Brianne: It’s a little different. So when you were in high school and you’re playing tennis and you default on a match, you go to a doctor at that point? And what did you tell them?
Kelly: “I’m really tired and I’m in pain.”
Brianne: Yeah. How’d that go?
Kelly: They’re like, “Well, let’s draw your blood.” Oh, there’s like nothing really weird and actually, I didn’t have an elevated sed rate. But they, like, didn’t quite know what to do with that. And then enter the like, 15 doctors that I went to the next year and a half.
Brianne: Okay, so where you just kind of going specialist to specialist and then eliminating a lot of things I’m guessing?
Kelly: They tried to, but a lot of it was clinical diagnoses. So it can’t really be eliminated or diagnosed in a way, because it’s like, “Well if you have this, there are eight symptoms that you should have. And you have, like, six of them.”
Brianne: You’re kind of on a spectrum of this syndrome.
Kelly: Yeah, you’re like… that’s not really that helpful. It’s almost helpful. Thank you. So I was put on a lot of different anti-inflammatory medicines to see if that would help with the pain and no, it turns out it did not. And it escalated to the point where my mom was giving me shots.
Brianne: For pain management?
Kelly: For those anti-inflammatories, which none of them touched my pain whatsoever.
Brianne: And was it like, joint pain, muscle pain, all of the above?
Kelly: Yep, and like everywhere, but mostly concentrated in hips, knees, lower back and shoulders. So just main joint areas. And yeah they were like, “Well, maybe she’s making it up.” And I went to a therapist.
Brianne: So you want to see a therapist in high school about it and what did they say?
Kelly: “Sounds like you have a lot going on and you’re a teenager.”
Brianne: Not helpful.
Kelly: No. Turned out it was not helpful. Now I go to a therapist and it’s super helpful. We actually know what’s going on and what I could be working on, and therapy actually can help with my pain. Phenomenal, phenomenal concept. But no, I was not taken seriously. And it turns out that all those medicines that I took, actually ended up hurting my stomach, so that was neat.
Brianne: So you started to have some digestive, like, probably more pain or other digestive issues? Yeah, heavy duty medication can be really difficult. Especially when they’re just throwing medications at you to see what will help.
Kelly: “If that doesn’t work, let’s up the dose! Oh, That doesn’t work, let’s try his more intensive one.” But like, we’re not seeing any help. So why are we still on this roll? So then I actually gained weight because I stopped playing sports, I pulled back a lot. So I was actually brought to my high school to play basketball and I couldn’t play anymore. And instead, I was doing, like, yoga, and that still hurt. The commitment of showing up to that still was a lot, it felt like, but yeah it was fascinating. My high school, it was a private school. We were required to play sports every semester or, like three sports that year.
Brianne: Right, so seasonally.
Kelly: I was still trying to participate as much as I could, but I actually ended up writing my college essay, applying to colleges, about how I used to be a jock and then I had this unknown illness that came over me and I started then doing acapella and I started a Habitat for Humanity chapter in my high school. I was doing these other things, so it kind of explains, like, here’s what was going on.
Brianne: Yeah, why there was this big change in your extracurriculars.
Kelly: But, like, little did I know that was the beginning of me telling my health journey.
Brianne: Yeah. Yeah. You have to learn how to explain it very quickly when things look different. Okay, so it wasn’t… It stays a mystery for a while it sounds like, but it was a mystery.
Kelly: It was a mystery and then in college, I was like, you know what? I’m going to reject everything doctor, and I’m not going to go to doctors. Because I was a college student, which was really hard for me when I was like, “Hey professor, I don’t think I can finish this paper in time because my health is flaring up.” I can’t explain it. And it’s like, “Oh you’re a college student. Just don’t go out.” No, but like I didn’t, but okay. So you know, I was at Vanderbilt, I was in a sorority, which is like there’s assumptions that are happening, right? Until senior year, when an ex boyfriend of mine took this class on medicine, health and society. So they’re like, “Oh, well, have you ever been tested for lupus?” No. So I went to a doctor and they were like, “Oh, yeah, you have lupus.” So for eight years, we thought it was lupus, and it was not.
Brianne: And how is it? How is lupus diagnosed? Because it’s in that, like, it’s an autoimmune kind of cluster of tests. Right?
Kelly: Again it’s another like clinical, but the elevated sed rate.
Brianne: Right, which says autoimmune.
Kelly: Exactly, that they could point to, and then there were just different symptoms that I had, so I had a jumble of symptoms. Yeah, that sounds like it could fit.
Brianne: Okay, so lupus. And that was your senior year?
Kelly: Yeah, senior year of college, um, and nope, it was not that. The things we did for that were helpful.
Brianne: And so at this point, how were you managing your flares? Like, did you have any kind of I’m going to say adaptations or even superstitions about it? Like, what did that look like?
Kelly: Yeah, so I was starting to put together that when I overexerted, the next few days were going to be difficult. Not just the next day, but the next few days, were gonna be difficult.
Brianne: And so more painful, more tired, that kind of thing?
Kelly: Yeah. So if there was something big going on, then I knew, okay, I was not going to be able to write papers for, like, the next few days. My brain was not really going to be in it. So I started having to manage my time differently, and that’s kind of it. Because I was in this very big… like I’m gonna just reject this because no one knows what it is. Maybe I am making it up.
Brianne: Sure. That’s a really real and hard thing to manage when nobody can identify or even really see that something’s not working.
Kelly: Absolutely. Yeah. I did get some recognition when I was able to point to “I have lupus.”
Brianne: Yeah.
Kelly: Which like still had a question mark at the end of it, but…
Brianne: It sounds real.
Kelly: It sounds real. And that would alter how professors worked with me. Yeah. “No, that’s fine. You can take the exam the next day. You can have another week to write your paper.” What? What’s different?
Brianne: Right, all of a sudden you’re credible.
Kelly: Right. All of a sudden I’m credible. So a friend of mine actually made me, she printed out and laminated a lupus card, and it said, like on days when you just can’t do it.
[dog barking]
Kelly: So my friend made me a lupus card for when I just really can’t handle it, or on days with a really big flair. On days when I really can’t handle it. On days where I’m in a lot of pain and on days where I just don’t give a shit. She just brought the sense of humor into it, which was kind of the first time that that happened for me. And that ended up being really important in my journey. It was this kind of bringing my health into my identity because they were two very different things. There was me who was this go-getter who just did everything and rejected this other part of me because it wasn’t true, it didn’t feel real.
Brianne: And it didn’t have a name, I bet.
Kelly: Yeah, and like, people didn’t really understand it, I didn’t understand it. I didn’t know how to speak about it. I didn’t have the vocabulary to speak about it. Besides, just “I hurt” or “I’m tired.” So bringing in this little bit of humor actually allowed me to identify with it a little bit because I am a sarcastic New Yorker. This is a big part of who I am. So having the lupus card, I was like, “Oh, my god. This could be me.” So I would talk about it a little bit. When I was in grad school, I spoke about it with my professors, then when I started work. I would say I told my boss from the beginning, “Hey, I have lupus and there may be days that are more difficult for me. So if you can work with me on that, that would be really appreciated.” You know, I would. I will be a better employee if we can work on that. And I called them my lupus-y days, because they didn’t really understand.
Brianne: Right. It’s still hard to actually describe. And so did you ask for specific accommodations or just kind of… work with me, I’ll tell you what I need when I need it. And that was working as much as it could.
Kelly: It worked to an extent because I was actually traveling internationally for that job. So there’s only kind of so much that we could do. But I couldn’t really work from home. But I could use the days that I accrued from my international travel of comp days or kind of just rest days. And I knew to plan when I got home, holy crap I’m going to need a few days.
Brianne: Time zones kill me now, I can’t imagine.
Kelly: Oh yeah, they’re totally real. So I also started at that point equating weather. So when there was a big low pressure system coming in didn’t matter what, I would flare. And so that was something that started and I started noticing more around that time. But I actually after that diagnosis from a doctor, I didn’t go to doctors for another… I guess I was with him for the three years. I did two years in Nashville for grad school. But then we moved to Chicago for a couple years and came out to Denver. And that whole time I was like, “No, no doctors, doctors make me sick.”
Brianne: Yeah, they make me realize more stuff. And so with lupus, it sounds like you were treating it as a symptom-management thing. Were you taking any new medications? I mean, like, you respond to being tired or being whatever, but otherwise there isn’t any kind of ongoing stuff that the doctor necessarily would have helped with.
Kelly: No, not really. I mean, because I was seeing this doctor and it just wasn’t… There was no progression that was happening. I think we tried me going off birth control for a few months because there were thoughts that maybe that could have an impact. That didn’t have an impact. We tried, I think, another drug or two that didn’t have an impact. And so I was like, you know what? We’ve already played this game in high school. I really do not want to play it again, because every time I go to an appointment, it is a big emotional experience. You know, I have all these thoughts around. Is my life gonna change when I leave this appointment? It just felt like doomsday every time. It just takes way more energy and, like, hope of a drug working. And then when it doesn’t work and I have to re-acclimate out of that and taper off things I was like no, no, no, no, no. We’re not playing this game any more. I’m just going to try to figure it out myself.
Brianne: Then without a doctor, were you doing any kinds of experiments? I mean, for me with the internet developing, experiments became easier.
Kelly: No, they did. I tried walking and then running, and I was like, no, that’s not going to work out, but then I tried actually going paleo for I think it was three months, which, for this New Yorker, was a very difficult experience. I started a blog called Bye Bye Bagels. Yeah, it turns out carbs do make me really tired. They impact my fatigue. So grains, really of any kind, just knocked me out. But gluten in particular, really, it has a big impact, and I cut out diet coke during that time. That was a big deal. Fast forward, I now don’t have caffeine in my life, and kind of removing all of the caffeine was a difficult transition, but I did it when I had the flu. So I was like, I’m just not going to go back to it and that was like “oh my God.”
Brianne: You are already went through the terrible part,
Kelly: Exactly, I went through the withdrawal, so let’s not go back to it. But like I was playing this game of I am going to jump from this caffeine to this caffeine to this caffeine throughout the day. And so when I just don’t have any, it actually can be better to have that baseline.
Brianne: And you get more feedback from your body. That’s my experience. Like, I drink coffee again right now, which is maybe or maybe not a good idea. But I just know when I stopped like, oh, I’m actually this tired from the beginning, and if I rest, I can recuperate. And if I turn off that lever basically I’m not even giving myself the opportunity to respond.
Kelly: So, paleo didn’t last, the reason being that the effort it took to eat clean kind of wasn’t worth the effort it took to stay brain fog free, and not really free but like, it was kind of the same amount of energy at the end of the day. I’m not as clear headed when I’m eating carbs, but there’s a level of energy that it takes where I’m like…
Brianne: Food prep is hard.
Kelly: No, it’s really, it’s a real thing. I just… there are a lot of battles I’m going to fight, and that is not on the agenda right now.
Brianne: That’s fair. I definitely cycles through and then eventually will remember, like as a symptom builds up or fatigue builds up, “Wait, what have I not been doing lately?” And I don’t know, 50% of the time, it’s like, “Oh, you’ve been eating as much sugar as you want!” That’s why this is happening, because you decided that sugar wasn’t a problem. And you’re lying to yourself.
Kelly: Again! Here we are again.
Brianne: Yeah, but it’s a lot of work. So sometimes… I think about that with social situations too. With caffeine or other diet modifications, it’s like, okay, well, is it worth the effort to either prepare an alternative for myself or really get into it with whoever’s hosting. Not in a confrontational way, but just explain everything about it so that they’re not weird. There’s so many steps. Or you could just eat the thing.
Kelly: Right. I’ll actually bring food in those situations.
Brianne: I usually do. And then sometimes I don’t. So, okay, it’s sounds like you went full paleo, and then some of that kind of stuck around or you noticed the difference. And now that’s a tool that you have when you need it, would you say?
Kelly: Yeah. So to continue the story.
Brianne: So you went to Chicago and then Denver…
Kelly: And then when I was in Denver about three and a half years ago now, I took a medication that was a sulfa drug that I did not know I was allergic to. Turns out I have an allergy to sulfa drugs. And I had a stevens-johnson reaction, which is not something that you want. Basically, my body shed itself.
Brianne: Okay, yeah, I’m not familiar with that one.
Kelly: It’s all of a sudden my lips were peeling, like my feet were peeling, just everywhere. Everywhere. It was so intense, and it was like, okay, so I need to go back to a doctor. So I found a rheumatologist, that guy was terrible. I found a new rheumatologist, and I actually had… it was a rec from my gyno. I was just like random, “I need a doctor. I can’t just look in the internet.” And I asked the doctor, and they’re like, “Yeah, go to this person.” And she took one look at me and said, “So it’s not lupus, by the way.”
Brianne: So this is the new rheumatologist.
Kelly: The new rheumatologist. Because I was like… something’s going on in my body. I didn’t know it was a stevens-johnson reaction yet, but something was going on in my body, and I was like, I need to go back to a doctor and just find out is this me or is this something else? And so I went to her and she was like, “Turns out. not lupus. I can see it… but no. And here is what you have.” And she just started listing these things and it was all clinical diagnosis again. But she actually knew of these illnesses.
Brianne: That would be refreshing.
Kelly: Which was helpful. And she did x-rays and she was like, “See here where you no longer have any collagen in your body, and your bones are hitting each other, and you have all these bone spurs, and your bones are actually that of a 60-year-old woman?” Like, oh yeah. That can explain some of that pain. And my husband, who actually has some of a medical background, looked at those x-rays and went, “Oh crap. That hurts!”
Brianne: Yeah. “That looks painful!”
Kelly: And I’m like, “Yeah!” And it’s not that he didn’t believe me before, but that image was like, “Holy shit.”
Brianne: It just contextualizes.
Kelly: Yeah. That made it real for him. And all of a sudden I had names and I had symptoms that I could explain. And I started making these connections around what are all these different things. And it’s funny because today I asked you if we were going to record this just audio or also bring in some video. And the reason I asked that was because I’m working home. I am in very comfortable clothing. And that is something that is part of my different illnesses, is being in really soft clothing that aren’t constricting. And being really warm is important because I run really, really cold. But all these different things I didn’t know were symptoms.
Brianne: Right. You just thought it was having a body.
Kelly: I just thought it was me. Like, I can’t sleep with anything that has a seam because that hurts. Any of that pressure up against my body hurts. I didn’t even know that was a symptom. I just thought that was me, you know.
Brianne: Right. So then with that doctor, which it sounds like has been a successful doctor. So then what were the diagnoses that she gave you?
Kelly: Well she gave me, the main one was Ehlers-Danlos Syndrome. And that’s a connective tissue disorder were collagen is… messed up.
Brianne: Basically your collagen is messed up.
Kelly: It’s messed up. Period, the end. But it’s a hypermobile version. There are multiple different types of EDS. And so for me, it’s a hypermobile type of EDS. And that has different implications than some of the other ones. So I went, and as soon as I got the diagnosis, I went and had an echo done on my heart. And I had an eye test done to just make sure that it was the hypermobile type, and I didn’t have multiple types. Thankfully, it’s and a lesser degree it could be others.That is what allows my bones to be bone on bone and clamour against each other all the time. And so that has caused osteoarthritis. It’s caused degenerative disk disease, and it also on a daily basis is this trauma to my body, which then flares up fibromyalgia. On top of that it’s kind of this layer of like, oh, your body’s in trauma, flare!
Brianne: “I’m stressed out right now!” Not in the mental health way, but like, it’s a physical stressor.
Kelly: Physical stress, right, so then about a year later, I got a diagnosis of POTS so postural orthostatic tachycardia syndrome, that is one of the co-morbidities of EDS. And so again, I didn’t know that like, being dizzy or passing out or all of these things could be symptoms that all make sense! So after I got those diagnoses, I actually went and I found these facebook groups of people that had EDS. And I’m like “Oh, my god. All these other people experience these things. That’s a symptom. No way!” So we are like piecing these things together. But it turned out that for me, those facebook groups ended up being really negative because people come together and just kinda bitch a lot. And that’s not really what I needed. You know, I got what I needed. I got the symptoms. I got the validation. That’s what I got. And then I had to kind of pull myself back. I did actually, there’s an EDS Denver group that I was like “Hey my rheumatologist that diagnosed me actually fell ill and passed away, I need a new rheumatologist in Denver.” And so I got recommendations through that group and I actually found a great rheumatologist. Having that local group is really helpful. So I actually took to instagram and I created my own handle on instagram @journey_to_soulshine, where I could just be me and be positive and do hashtags and now have this kind of positive community, which is awesome.
Brianne: I so, so relate to that. I am in a bunch of chronic illness facebook groups, and it’s true that the tone is just different, and I think it’s super important for people to be able to commiserate with each other because, holy crap, if nobody’s ever believed you or empathized with you your entire life, then that’s amazing. But there’s something for me, partly it’s the way the commenting structure works on facebook because I use twitter a lot to talk about whatever is going on. I use twitter a lot as like thought vomiting. Basically. So partly nothing, right, tv shows that I’m watching or whatever, twitter is perfect for that. And then partly for talking about.
[Dog barks again]
Brianne: I like it because you can put anything out there. And sometimes people will respond or commiserate, but it doesn’t create these like pile-ons that I think are kind of unique to facebook for some reason. With twitter and also with instagram, you can do a one-off and sure people can comment or engage, but it just doesn’t, I don’t know what it is about facebook, but I’m with you. I don’t think everyone has to be forced positive all the time because sometimes it’s not positive. And it’s also frustrating when, like the outside world, thinks that positivity will solve your problem, but like acting, I don’t know. There’s something about it that’s almost performative negativity that can kind of happen in this vacuum.
Kelly: Well, and what is interesting, so actually it was fascinating that when I got my diagnoses, my parents rejected them, because there was not a cure. They said “What do you mean you’re not going to get better?” And in fact, I actually started feeling worse after my diagnoses. And it’s because the stevens-johnson reaction that I had, which I ended up going to an allergist and learning that’s what it was, catapulted my illness to another level. It was a systemic allergy, so it impacted my entire body and it just threw my illness into this next level. So I just felt things more, and it was really difficult. But then, also with the kind of combination of validation that I shouldn’t be walking more than five minutes a day, look at your body. You need to strengthen the muscles around your bones before you can start trying to do these other things. I just was like, “Well, I guess I could just stay home then.” And I had this validation of that.
Brianne: That it’s okay to rest.
Kelly: Right, it’s okay to rest. But I didn’t really know how to communicate that at first, so I got in my head a lot. I was like, well, I shouldn’t go out. I should actually rest, because my body is flaring. And what I used to be doing was just doing it regardless, I would just reject it and do it and overextend myself and just go into, like, disaster mode. But now I’m trying to catch myself, but I’m canceling on social engagements, and that feels weird. I don’t really know how to do that. So I would build something up in my head of, like, “Okay, so it’s Friday night and I know we have something we want to do on Sunday.” So I would sit on my couch and be in my head until Sunday and then cancel like five minutes before. Then I would just be like “Can I go? Should I go? Can I go? Is it just gonna be worse for my health, am I going to be okay?” And I just, oh my god, I would just get into this spiral and so my parents were like, This can’t be your life. Let’s actually go and see if you can get confirmation somewhere else and get a second opinion.” So a friend of a friend was able to get us to talk to a rheumatologist at Cleveland Clinic. I went to Cleveland Clinic with my mom and so this was kind of like bring back 15-year-old Kelly. I’m with my mom going to doctors. Like fast forward to me being like 29, or I think I was 30 at that point of that appointment, and I’m like, here we are again. And I knew all my symptoms. I had done all this research. I kind of at that point, knew how to advocate for myself, to a certain extent. So I went into this doctor’s office and I knew so much. I had a language. I was like, “Oh, yeah. So we’ll do the Beighton to see if I have EDS.” Which is like the clinical way to diagnose EDS. And they’re like, yeah. All of a sudden, I had this language that I could use, and they not only confirmed all of this, but they were like, “You really know what you’re doing.”
Brianne: Like, “You are managing it the best that we can tell you how at this time.”
Kelly: Totally. So my mom was blown away. She was like “Do you actually know what’s going on now?” It was really happy, but your quality of life at this point is not great. You’re going to work and you’re coming home.
Kelly: I was going to say, were you working full time?
Kelly: Yeah, and when my illness took that next level jump, I was working at a small family-owned company where I really was starting to advocate for myself with my health and say I need to work from home during these times. I may need to just go to doctor’s appointments all the time, because that’s just what happens when you have a chronic illness, it’s a full-time job to manage your symptoms, your doctors, appointments, blood draws and follow ups, medications, insurance. I don’t even want to go down that road. And they really understood because I would get my work done. But I was able to have a really flexible schedule.
Brianne: Okay, that makes such a difference.
Kelly: Oh my god, it was revolutionary. So that was really helpful at that time because I could manage and prioritize self-care that way. I didn’t have to advocate for myself too hard, or get shamed in different ways. People just kind of met me where I was and they were like, “Oh, that sounds difficult. And also look at all the things you’re able to do.” I’m like “Well, that’s neat!” Now I’m getting this validation that you have been dealt a tough card and it seems like you’re succeeding.
Brianne: Yeah, like you’re working around it to do what you want or need to do.
Kelly: Which is great. But at the same time what I saw was I’m doing way less than I used to and I’m doing way less than I think I should be doing. You see less despite this, I see what is my life.
Brianne: Yeah. And what is my quality of life around how much energy I’m putting in to say work and self-care. Like what else am I doing or what do I want to be doing.
Kelly: There’s no space for me to do anything. And thankfully, my husband is really understanding of all of these things. And I have known other people with chronic illness where their spouse doesn’t really understand or know how to interact or how to support and that can be challenging, that relationship can be challenging. Thankfully, I have a really, really supportive spouse who came to some appointments with me knowing that that was a really big deal for me. He would encourage me, would just give me my space. He wouldn’t get mad if I needed to cancel something socially, would just understand. So that is awesome to have that. So coming out of Cleveland Clinic, I actually got information around the Mayo Clinic’s fibromyalgia clinic. There’s a lot of clinic in that sentence.
Brianne: But I followed.
Kelly: The Mayo Clinic has a fibromyalgia clinic, and I went there for a week, to Minnesota. Thankfully, my job was like “Yeah, sure! Take your time. Do what you need to do.” I learned all about fibromyalgia and how stressing my body mentally, not only physically, was really detrimental to my health.
Brianne: I’m just super curious. I haven’t heard about their fibro clinics. I’m super curious about the format. So if you’re going there are they running tests? Is it a combination of clinical visits and educational?
Kelly: Yeah, it was a combo. I did a sleep test, a sleep study, and I went to one of their rheumatologists. And I went to PT and I went to OT. I also went to these fibro classes. So yeah, it was a really kind of holistic picture, which is awesome. I think I got blood drawn, like just kind of got the works. What I was aiming to do initially was go to talk to somebody about EDS, and they were like, “Oh, there’s like a three to five year wait list.” That sounds neat. So I learned more about this fibro clinic and was like, yeah, let’s do that. I want to do something where I’m being proactive. I want to boost my quality of life. And what happened was when I left there I was given basically this health plan where I started with five minutes of walking a day. I did that for two weeks, and then I boosted to ten minutes a day for two weeks. And then I eventually made my way up to 30 minutes a day. Then I started adding some gentle PT exercises five minutes a day for two weeks, I eventually made my way up to 30 minutes. And then I was doing diaphragmatic breathing in the same format. And so at the end of like six months of doing these things, I was doing 30 minutes of all these three things and feeling so good.
Brianne: And it was helping. That’s what I was going to say. So, how was it working across your spectrum of body stuff?
Kelly: It was really working. A parallel journey for a moment, was, and we don’t have to go into the depth of this, but just so that you have an understanding of where I was and the kind of mental chatter that can happen, I had been going through fertility treatment, and we got pregnant. So when I went to the Mayo Clinic, I was pregnant, and I actually was able to talk with them about what all those different illnesses were going to do to me and pregnancy and, “Oh god, what do I have in store for myself?” And then when I got back from that trip, we learned we miscarried. And so I did not start all of theis prescribed health path. I didn’t start that because I was, like, “Okay, I’ve got to mentally deal with this thing for a second.” And it turned out it ended up being a molar pregnancy, which means there’s an abnormal placenta that becomes cancerous. So I needed to go through chemo. And then I was told to wait for six months and go on birth control for those six months while we waited before we could do treatment again. And I’m like, you know you’re killing it trying to get pregnant when you go on birth control for six months.
Brianne: Yeah. Clear signals to the body!
Kelly: Right. So it was after chemo where I was able to actually start all these health things.
Brianne: Okay, yeah. And that is a lot. It’s a lot of emotional stress and stress on the body and…
Kelly: Totally. And I just… like, if there’s a bottom, I hit it. Just in terms of like, how many things can one person handle with their health at one time? You know, it just felt like quite a lot. Cue the humor coming back in. We threw a chemo party. Because that’s what you do, of course. Because I was like, I’ve had it. And I want support. And I want love. And with my experience with chronic illness, when I talk about things, people don’t really know how to meet me where I am. And I have been talking about my chronic illness since my diagnosis and as soon as we miscarried I talked about that, and I talked about the molar pregnancy, and I talked about fertility issues, and I finally was like, “And by the way, I need chemo.” And everyone’s like, “What is happening?” And they didn’t know how to support me. And I didn’t know how to accept support. So I just said, “Come over. We’re having a party and it’s going to be a positive environment. I do not want people to tell me ‘I’m so sorry’ because I don’t want to go in that headspace. I can do that all day long.” There’s a certain level of validation which is really helpful. But also, I just need to be able to have laughter in my house right now. So we did that at a time, it was like a mid-afternoon where I’m not gonna have to expend too much effort for myself.
Brianne: Definitely not at night time.
Kelly: And it’s come to me in my house, where I can wear whatever I want and do whatever I want and and sit down when I need to in a comfortable chair and bring all the food and drinks that you can’t have when you’re pregnant and let’s make these bright yellow chemo drinks. But it was an opportunity for people to come over and just give me a hug and also just like love on me.
Brianne: Yeah, and like show up.
Kelly: And show up. Because I think that’s one of the hardest things when you get diagnosed or you have these different things and people don’t know how to connect, it can feel really isolating. And it can feel really lonely.
Brianne: Yes, and I like the way that you’re framing it, because it does. When you are the person who is sick, it feels really lonely. And you’ll see, this is something that happens in the facebook groups and stuff, is people chattering about their friends abandoning them, and I don’t think that that’s happening. But I think that people are so afraid of saying or doing the wrong thing that it becomes paralyzing. It really makes me think, if I can diverge for a second. I hadn’t thought about this before. But I used to co-run a storytelling event that was specifically targeted, it’s called Stories We Don’t Tell. And so it was all, like, grief and loss and just embarrassing stuff, sex stuff, whatever. A real downer of a night, basically. But one of the rules that we have, that they still have because it’s still happening, is that at the end of every story, just clap. So you might not know how to respond because you might be kind of overwhelmed. And you might think that clapping is the wrong response to a story about grief or loss, like you don’t feel enthusiastic. And so that was one of the ground rules is that we’re going to just tell you how to respond, and clapping is the right response. And I think that would be like, whatever the cultural version of that is, what is appropriate to do when someone tells you any of these things? Here’s something going on with my health. It’s not going to get better.
Kelly: Right. This is my life now.
Brianne: Yeah, this is my life now. You don’t have to say you’re sorry. Something else.
Kelly: Can you treat me normal, still knowing these things about me? Can you not tiptoe around me, can you not not invite me because you think I won’t be able to come.
Brianne: But also at the same time, like respect…
Kelly: And see me, respect me for what I need, right?
Brianne: Yeah, like but also evenings don’t work. So it doesn’t mean don’t invite me. But if you’re trying to make one-on-one plans with me, make them in the afternoon. There’s a lot.
Kelly: Yeah, right. It can be complicated. But I think what it is is it’s like, come on the journey with me. And if you’re in it, that just means that we can have a conversation where neither of us are afraid about what we’re saying. It’s just an honest and truthful and authentic conversation where I’m saying, “Actually, evenings aren’t great for me. Can we do something in the afternoon?” And there’s no shame around that, but somehow it’s really difficult to say.
Brianne: Yeah, it’s hard to ask for and I think in my own experience it’s hard… It can trick people into the headspace of thinking they’ve done the wrong thing. And so you’re like both recoiling at once, which is not where you want to be.
Kelly: Right, and it’s like “No, but show up with me and experience it with me and navigate it with me.” And the more that we can both do that, the easier it is for both of us. It is really hard to paint that picture, really, really hard. So I think that’s something that I have learned over time is how to say, “Here’s what’s going on with me,” without making someone else feel bad about what’s going on with them. Or sometimes people can get like survivor’s guilt. Where you’re saying, “I feel so bad.” And they’re like, “Oh, well I feel just a little bad, but it’s not nearly as bad as you are.” And then they don’t want to talk about how bad they feel. You know?
Brianne: Yeah. That’s not what I’m trying to set up here.
Kelly: No. It’s just like, “Hey, let’s talk about me for a second and acknowledge that, and then let’s talk about you because no matter the degree of that, you’re still feeling something.” Yeah, no, it’s really difficult to navigate for sure. And again, I think it comes back to some of that language about like, here are the needs that I have, here are the symptoms that I have, here are the things that will make things better. And so that’s what, with that chemo party, I actually put out a journal. And I invited people to write me a note, and I got all of these notes from people saying, like, how strong I was. And I didn’t know that that’s what I needed until it happened. Because now I have this journal that has all these notes saying, “You are strong. You’re a badass. You can do anything.” I’m like, “Oh my god, that’s amazing.” But if I didn’t have this party and invite people over or put this space out for them to write something, that wouldn’t have happened.
Brianne: No, you would never get that feedback. Or you would get it from very few people, but it wouldn’t be in hard copy.
Kelly: Right, something that I could actually keep with me and reference. So I think I started learning along the way that I was getting positive feedback when I was advocating for myself. And in a positive way. Well, I wasn’t just headstrong, head down and like, “No, screw you, this is me!” I was taking steps that felt really authentic to me of here’s my story, let me invite you in. And I actually started using a cane. And that was something that I needed to explore verbally with friends. And then also writing has been a really helpful resource for me of like, is this a story I’m telling myself? I had a lot of stories I was telling myself about somebody in their 30s using a cane. A lot. A lot of stories. And that’s like the hashtag but you don’t look sick, because I otherwise look like a healthy person.
Brianne: Right, yeah. There’s, oh my god, the things that people say to you, and then what that leads to the things that you think that other people are thinking, and it’s… none of it matters. But it’s so easy to get caught up in all of the stuff around it. Definitely.
Kelly: So easy. Absolutely. But my husband and I were planning this trip where we were going, I was going for work to Dublin. Then we were going to Croatia just for us because this was during the due date of our first baby.
Brianne: Okay, yeah. So get away.
Kelly: I was just like, nope. I want to be doing something happy and something that we wouldn’t have been able to do had we had this kid. There were just a lot of different aspects to it. And then we were going to France after that, and I’m like, “How am I going to do this with all of these illnesses? What am I going to do?” And so that was actually what helped me start my Mayo Clinic health plan. I was like, okay, I want to be able to be strong enough where I can walk around for ten, 20 minutes and not feel like I’m gonna die. And so that was what started me on that health plan. I needed something that was going to be this future motivation that would get me there, so that when I was thinking, “Oh I don’t want to walk today.” I was like, “But I want to be able to do x, y and z.”
Brianne: Yeah, “I want to be able to walk that.”
Kelly: Yeah. It was a really positive way for me to do that and stay on track with that. And that was what helped me explore the cane. And I ended up getting a cane and naming her Candy the Cane and putting washi tape on her. So she has some stripes, like Candy the Cane. And when people asked me, like they’d look at me and be like, “Do you have a knee problem or something? Did you mess up your ankle?” And I’m like, “No, this is just me. And her name is Candy, and she’s great. And she helps me go places.” And they’re like, “Wait, huh, okay. I thought differently. You’re making a joke, kind of. But you’re also telling me what’s honest and what’s good with you in such a way where I can actually be like, ‘oh, cool.’” And then we can move on with our day.
Brianne: Yeah. And like, go think about that somewhere else. Because you didn’t know this about mobility devices, which is just true. So that’s true.
Kelly: Right, yeah. It’s definitely been a really interesting path having people… because I also started using a service dog. And these visible aspects of invisible illness are really, really interesting in terms of how people react.
Brianne: Yeah. It uncovers a something, a world that you maybe kind of thought about but didn’t see.
Kelly: Right. And now you have to actually show up and you have to face it. But you can’t pretend that I said something and you forgot or something like that. Like it’s there.
Brianne: It’s still happening.
Kelly: Like, the dog is in the room with us. So clearly, the dog is here for a reason. And one of the main reasons that I started using Rogue, my dog, as a service animal was one of the things that I really took from the Mayo Clinic and I worked with my doctors around, was this idea around fibromyalgia and calming my body and grounding myself. So one of the things that I had mentioned earlier was that I noticed that weather was a big trigger for my symptoms. So if I was at work and I looked outside and there were dark clouds, I would flare regardless of whether or not my body was actually going to flare. Because I started like, “Oh god, this is gonna happen. I’m gonna be in pain.” And then it’s a self-fulfilling prophecy to an extent that I’m in pain. And so I started really kind of working with that parasympathetic nervous system and grounding myself. And so I would work with my dog to take deep breaths, relax. And she would actually be able to know when I was starting to get down that path to help me take some deep breaths and calm down and just stay curious with it and say, “Okay, well my pain comes and goes. It always comes back. But it does go away sometimes. Like it’ll disappear for a second and it’ll come back, but it will dissipate for a second. What if I don’t flare this storm, is that possible?”
Brianne: And letting that be possible.
Kelly: Right. And man, that’s powerful. That’s really, really powerful to check in at that level with your body and stay curious with the pain instead of judging the pain. And there’s just a whole nother podcast that you could totally do on that. But it became this empowering moment, I think, where I started to take some control over my symptoms. Because there were these outer things that would happen, like weather. I can’t control weather. But maybe I could have a level of control over how much I flare.
Brianne: And how much you dread it, too, because I think that’s what you’re talking about a lot, too.
Kelly: Exactly. All of this mental chatter is kind of what I talk about it, because it kind of leaves it objective. It’s not necessarily negative, but it’s just there’s a lot of noise that happens, I think, in your head with illness. Because there’s a storm, so that equals flare. So do I want to go home early? And if I go home early, I was going to pick this medication up. Can I still make that? This whole train of thought starts going, and it’s like, “And then I’m going to stay in tonight. And so I’m going to have to cancel my plans tomorrow.” And all I did was I saw a cloud, right? But I have totally scheduled myself and changed all of these things because I have predicted that I’m gonna be in this terrible pain flare. And all of these things have subsequently happened, where actually nothing has happened, it’s just a cloud.
Brianne: Yeah, we’re not there yet.
Kelly: We’re not there yet. But it’s amazing what the mind can do with physical symptoms. And the connection that that has.
Brianne: And our strong strong desire to protect ourselves and avoid pain at any cost, which is not rational.
Kelly: Right, it’s not, it’s so true.
Brianne: Okay so great. So then at this point, are we at the present yet? Are we close to the present? Just in terms of… other stuff that you’ve kind of figured out or added in or I feel like the diagnostic side is up to date.
Kelly: We are. I did, however, after that trip to Europe, we successfully took that trip. And I have now been to 41 countries which I’m very proud of.
Brianne: That is many countries!
Kelly: And with chronic illness, take that. But when we got home, we did more fertility treatment and we got pregnant. And I now have a three-month-old daughter.
Brianne: And how is that?
Kelly: It’s amazing. But that was a whole nother part of the journey. And actually my pregnancy went better than we expected. My labor went better than we expected. The one thing I think my illness has given me, EDS, was that my connective tissue disorder allowed labor to be a lot quicker because I’m super flexible.
Brianne: Sure, just a clear pathway.
Kelly: So I was like, “Oh, can I say thank you to that? I don’t really want to, but okay, great.” But yeah, so now I’ve had some random health issues flare up since then. But overall, I’m actually doing really well with that. And so that I think has been another piece of the journey is that the work that I did with what I learned from the fibro clinic and building my body up to be ready for pregnancy and that level of strain was really, really important for me. And I’m not quite where I was, because I have a three-month-old child. But the pregnancy made that a lot more difficult to keep at that pace, and I had to pull back a lot. And I actually, the week that we learned we were pregnant, I learned that I had mono.
Brianne: Ahhh!
Kelly: That was kind of awesome. And I took that as a check-in with myself. Like, you need to pull back. You need to be really honest with yourself about what you can do. So I’m not at the pace that I was at. I know I will get back there eventually. I know I can get back there, which is, I think, the most important piece. You know, that it’s possible that I can get to a place where I can walk 30 minutes consecutively, and do 30 minutes of exercise in the same day. That’s kind of mindblowing to me.
Brianne: Yeah, it’s a lot of stuff.
Kelly: But right now I’m like, no, I’m just trying to figure out how to feed a child.
Brianne: Yeah, I think there’s… I don’t have a child, but I’ve been around a child… there’s a lot that goes into it.
Kelly: Yeah, there’s definitely a lot. But I think the resiliency that I built of learning that pain can come and go. That I can have a level of influence on how I feel or how I’m just showing up around it. Right, and the mental space that I have around all of these things. Because they’re gonna happen. So I might as well be in a happier place and a place of acceptance.
Brianne: Yeah, because that’s the part you get to choose.
Kelly: Exactly. So I think getting to the place of choice has helped with that resiliency around all those things. And so my health is not to the place where I know it can be right now, but my mental health is. When I was checking into the hospital for labor and delivery, and they’re like, “So let’s run through your medications.” And I had a laundry list of medications, and they’re like, “And you’re not on anything for depression?” I’m like, “No, actually. That is what I work on all the time. I’m working on my mental space a lot.” And that then feeds a lot of places. This nurse was like, “Whoa.” You know, there’s almost this expectation. Like yes I’m in therapy, and I love it, and I get a lot out of it. But no I’m not on anything for mental illness.
Brianne: Yeah. Yeah, I can imagine that being the assumption.
Kelly: I get that every day too. Yeah, it was an interesting assumption that I don’t think I was expecting, but she was also not expecting the answer that she got. I feel like a lot of what I do with chronic illness is educate medical professionals all the time.
Brianne: Yeah, there’s a lot of work to be done there.
Kelly: [sighs] Oh, man. I’m like, “Actually, this is what the spoon theory is, by the way. You should probably know that.”
Brianne: Yeah, like build the language for that, for sure. And so now, you have a three-month-old, you are building a business, it sounds like also.
Kelly: I am! I am. So as life would have it, I was laid off when she was six days old, which was unfortunate, but also fortunate, because it could have been when I went back to work and that would’ve been crappier, I think. But really, I think I got what I needed from that company. I learned a lot. I really enjoyed my time there, and I still look back at it positively. And now what makes sense to me is to take all that I’ve learned over these last few years and turn around and start helping other people with these things that I have worked on. So I am building a coaching business, which is really exciting. It’s also really kind of nerve wracking in a way, but it just feels so right. It feels so true, so authentic to me that I’m really excited about it. I’m going through this coaching training program right now, which is great. And I have a couple pro bono clients that I’m working with to start.
Brianne: Yeah, to figure out the process.
Kelly: To figure out the process but then also to figure out life with chronic illness and having your own business. Like, how much energy can I expend during the day? How many clients can I have? Because I don’t want to start working with a bunch of people and then be like, “Listen, I actually can’t work with you because I have too many people.”
Brianne: Yeah, I have huge unanswered questions about that. About making commitments to people. Like, I have so many things that I would love to do and I can do them if you can work on a totally open timeline forever. So I will never tell you when I’m going to get back to you, but I will get back to you. So if that’s a business model that we can figure out, that would be really great.
Kelly: Yeah, well, for me, I think what’s helpful around this is that I can be at home. I can do this during the times where Lily’s at daycare. And I can also weave in things when she’s napping, because she’s going two days a week right now. So those are days where I can do things like this.
Brianne: Yeah, hello!
Kelly: Great. And share a story and hopefully help others. And, I don’t know, I get a lot of energy around it.
Brianne: So, yes. Being at home working, and figuring it out as you go and what your commitment levels can be.
Kelly: Totally. So, yeah, I think right now I’m in the process of figuring out what that will look like. But then also I think the more I can find something that gives me energy, the better my quality of life is. So that was something that I worked on with my therapist, which was fascinating. Because I know all the things that take my energy away. What gives me energy? That was a question that I was like, “Wow, you really have me stumped. I have no idea.” And it took me a while to try to figure out what are the things that give me energy? And so, yes, there’s a lot that comes with building a business. So, you know, that is kind of what it is. But also, if I can do something that gives me energy, that’s amazing. So I think I’m excited about this because I really want to help people navigate their journeys. But also I’d say because I think it’ll help me with my own, which is huge. It’s really cool.
Brianne: Yeah, yeah, that’s like I’ve been doing a bunch of interviews the last little while. I love talking to people. I am scared about scheduling most things right now because I have to cancel stuff so often, but with thes, I’m just like, no, I’m always…. show up in whatever state of dressed and showered that I am that day. But I’m always really invigorated by the conversation. And so it’s doable.
Kelly: That was actually, I was invited to do a podcast when Lily was, I think six weeks old. I was contacted through my instagram about, “Hey, we’re starting to do these podcasts. We want you to share your health journey.” And at that point I still hadn’t gotten back to some of my friends that were, like, “Congratulations!” You know, I just hadn’t been in the world of communicating with people are, or the world of not sleeping when you can every moment of every day. And I made time for that call. And that was a big sign to me. It was like, okay, you need to really share your story, that’s the path you need to go on.
Brianne: This part works.
Kelly: Yeah, exactly.
Brianne: That’s very cool.
Kelly: I’m glad you’re finding something too that gives you energy.
Brianne: Yeah. No, I love it. And as a person, I’m doing two things right now with some kind of background noise. But I like to cross stitch. And so I design cross stitch patterns and sell them online, like I have a website for that. And then I did a couple interviews for this last October, and then I had a toxic mold exposure, basically. So went through like… I’ll call it a flare, but it was basically a whole other cluster of symptoms. And so I did a couple and then dropped it. And then I did a couple more in the spring. And then this fall I was like, “It’s time! It’s time to put this out in the world.”
Kelly: Good!
Brianne: It’s all fun stuff. Alright, is there anything that we haven’t really covered? Or that’s come up for you while we’ve been talking? It’s okay if the answer is no.
Kelly: Yeah, I think we’ve covered a lot. And we’ve kind of gone through it chronologically to an extent, which is kind of fun for me. To relive things in a way and be like, “And here I am now!” And I think it’s not despite these things, but because these things. right. And when we can get to that point of “I am me and I’m great.” That was not me a few years ago, that was not me ten years ago. It was not me 15 years ago, with the doubt and the shame and all of the things that come in with chronic illness and there’s so many resources that people can learn and it’s not overnight, and it takes a while, and it takes a lot of work. But you can get to a place where you find peace around these different things. And, man, is that worth everything. Yeah, I think we talked through a little bit about how I explored that stuff, so it’s great.
Brianne: Thank you so much for taking the time to talk to me! I love hearing this stuff from the very beginning, when it’s a weird mystery. Because sometimes as we get more into it, that part of the history almost gets lost.
Kelly: Yeah, no, absolutely. It all comes back to that tennis match, man. When I tell people that in Colorado, they’re like, “Tennis?” I’m like, “Yeah, don’t worry about it, it’s fine. I played tennis, it’s cool.”
Brianne: Yeah, it’s good. It’s a thing.
[guitar riff]
Thank you for listening to episode 10 of No End In Sight! I’m incredibly jazzed and grateful to have made it this far. Speaking of gratitude, David Laurin helped me out with the transcript again this week and is basically making my life a million times easier. You’ll be hearing from him in a couple weeks.
If these stories have been resonating with you, then I really would love to talk to you too. At this point I’ve interviewed a lot of straight cis white women, and I’d particularly love to talk to people with other perspectives. You can get in touch by visiting NoEndInSight.co or by contacting me @bennessb on Instagram and Twitter.
Plus 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 share resources about a lot of the questions Kelly mentioned about building a business while taking care of yourself.
And finally:
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 picked out the colors for my winter patterns, and I’d love it if you checked us out at digitalartisanal.com.