Brianne talks to Elizabeth about lupus, dysautonomia, and the bureaucracy of survival.
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Today I’m talking to Elizabeth about mental health, physical health, and the bureaucracy of survival. Our connection was a little bit spotty and we lost some sound quality, so I’m sorry about any weirdness in your ears.
Before jumping in, here’s my normal 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.
Elizabeth: It sounds like a really cool thing to be able to do when you’re stuck at home.
Brianne: Yeah. Yeah. And I like the internet so much for being able to connect online with people. And I think at first I wanted to know what everyone’s doing that’s working for them, to collect everyone’s secrets for surviving. And that’s still kind of true. But as I’ve started talking to people, I just like talking to people.
Elizabeth: Yeah, it gets lonely.
Brianne: Yeah. Yeah. So that’s it. Okay, so, like I said, I just like to start with: Were you healthy as a kid?
Elizabeth: As a kid? Physically, yeah, I would say I was very healthy. I had some stuff, I had normal… I had a heart murmur, but that went away. And I had random kid stuff. What was the problem when I was a kid was my own mental health. That started at a very early age. And I believe that there’s a lot of connection between mental health and physical health and trauma, and they all kind of go together.
Brianne: Yeah, totally. And my experience with that kind of stuff and being a kid is that you don’t know yet that anything is unusual. So do you feel like you were in a situation where you recognized that something wasn’t right? That might be the wrong word. Or is more of this in retrospect for mental health stuff?
Elizabeth: Yeah, I was very frustrated. It was frustrating not being able to control myself. So I was diagnosed with ADHD when I was nine, but they told me at that point, well they told my parents that I would probably be bipolar, I was just too young for it. Then at 12, I was bipolar, which is a very young age for that diagnosis. And I got more diagnoses as I got older. But yeah, I knew that I couldn’t control my emotions, and I knew I was the one sent to the back of the classroom because I couldn’t sit still. I knew I was different, and it was incredibly frustrating.
Brianne: Yeah. And so with ADHD, were you put on medication?
Elizabeth: Yes, I was put on ritalin. And then I’ve been on lithium.
Brianne: For bipolar?
Brianne: At 12?
Elizabeth: Yeah, at 12. That actually caused some physical issues for me when I was 20… 22? 21 or 22. I had my thyroid completely removed because the lithium had turned it twice its size and turned it green. So there’s a lot of comorbidity in all of that. I don’t know what it’s like to be healthy. And I don’t know what it’s like to not take medicine. I also did have asthma growing up. So I’ve always had to be the kid who brought her medications to the sleepovers and had to go to the school nurse at lunch. And I can’t remember what it’s like without it.
Brianne: Yeah, yeah, without this extra thing taking up cognitive real estate.
Elizabeth: You can’t just take off, you can’t just go do your thing. There’s always something.
Brianne: Yeah. And wow, I mean, 12 sounds very young to start lithium. I’ve talked to a few people who have taken lithium at different times. That’s an aggressive diagnosis, whether or not it’s, you know, wow.
Elizabeth: Accurate. I don’t dispute it. And lithium is a wonder drug pretty much.
Brianne: Yeah, yeah, totally. It’s just like, 12. And so then how was high school? Did it help?
Elizabeth: So I was good until eighth grade. And in eighth grade, end of seventh, eighth grade, things just really took a turn. As a child, I was very gifted. I was in all the gifted classes. Sometimes they didn’t have enough gifted classes, so I would have private tutoring and advanced studies because they just didn’t have anything to do for me. I was an early reader, I was advanced in all these things. By the time I got to eight grade. I was in the resource center and things like that. It was a total switch from what I was used to, because my mental health had affected my cognitive abilities so much that I simply couldn’t understand the material anymore. And then by freshman year, I was in and out of the hospital every few months for psychiatric reasons.
Brianne: Okay, and that would be really tough.
Elizabeth: I very ostracized by my classmate. They did not… Because they were kids, they didn’t understand why someone was acting like that. I’ve had them tell me now, some of them, that they feel bad for not understanding, but like, how could you? You’re 14 years old. I didn’t understand.
Brianne: Right. You have no context. So you were in and out of the hospital in high school. How long would you say that that period went on for?
Elizabeth: From age 14 to early twenties.
Brianne: Early twenties. And early twenties is also it sounds like when you had the thyroid issue.
Elizabeth: Yes, that’s when I had my thyroid taken out.
Brianne: And I was going to say, did that change your medication protocol?
Elizabeth: I’m on levothyroxine now. So I’ll be on that forever because I don’t have anything left. So that got added to it, yeah.
Brianne: And so did you finish high school. How was… it’s hard to prioritize something that feels arbitrary when there’s something bigger going on. But how was the school side of things?
Elizabeth: I did finish high school. In fact, I finished a semester early, and the last semester that I was in high school I actually spent half days volunteering at the special school district. People didn’t expect me to graduate. And I actually got an award from… I was in an alternative learning program, and I got an award from them for outstanding senior, and I graduated early, and, yeah. My motto has always been: prove them wrong. So that’s what I choose to do.
Brianne: Yeah, I went to a self-paced high school, which is what it sounds like. There were semesters and there were classes, but you could choose to do them faster or slower, basically. And for a while, that was really helpful when I think I missed a month of school at one point, and you just figure it out after. Okay, so then after high school, what did you do?
Elizabeth: After high school, I went to college for a while. It wasn’t great for me. I was enrolled in college in a distance learning program when I got sick. And then I had to drop out.
Brianne: And when you say you got sick, is this when physical symptoms started?
Brianne: Okay, so, it was a distance program. Were you still living at home?
Elizabeth: At this point no, I was living with my partner, Dustin.
Brianne: Okay. Okay. So how did the physical stuff start?
Elizabeth: I had fevers regularly. Muscle pain, joint pain, fatigue, rashes, like face rashes. Those were the main things for the beginning. They had me take the ANA test, and it was positive for lupus. But that’s the only time it’s ever been positive. So they didn’t give me a lupus diagnosis even though I meet all the criteria except for the ANA stuff. So I have a lupus-like syndrome. And they treat it like it’s lupus. I’m on plaquenil.
Brianne: Which is an immunosuppressant, right?
Elizabeth: Yes. An antimalarial.
Brianne: I just googled the spelling for that today actually. When I was doing the transcript for the episode that went out today. Half of transcribing is just making sure I spell drug names right on these episodes.
Elizabeth: I always spell it wrong to the point where my autocorrect spells it wrong now.
Brianne: So at the beginning, when you first started to show these symptoms, did you immediately think something was wrong? Or did it kind of build into something? Or when did you go to the doctor, I guess.
Elizabeth: So, actually, the first time I went to the doctor was I think three years before that. My dad had just died. And it was a very traumatic event for me. And they believed then that I had fibromyalgia. And I went with that for a while. But the symptoms that I was experiencing just didn’t seem quite right.
Brianne: And what was… at that point what prompted the fibro diagnosis?
Elizabeth: The pain. Muscle pain, joint pain, just general not feeling good that I believe was brought on by the trauma. So I’m sorry, what was your question about?
Brianne: So that was the first time you went to the doctor about physical stuff. That sounds like in your late teens? Early 20s?
Elizabeth: Early 20s. 24.
Brianne: Okay, 24. And then, I’m just thinking it through in terms of what your life must have been like. And at that point, were you in the distance learning program in college?
Elizabeth: Yes, I definitely was still going to college in a physical place.
Brianne: Oh, okay, going to a physical college. Okay, and then, yeah, that would get harder as things became harder. So you were doing that, and then were you treated for fibro in any way?
Elizabeth: I believe I was given a medication. Hard to remember.
Brianne: Yeah, no, that’s totally fine. Because I think right now, I think they prescribe lyrica to a lot of people, but I don’t know. I think it depends on the doctor you see and the protocol they recommend. And I think a lot of people are kind of told to live with it.
Elizabeth: Well, the problem is being a woman, being a young woman, and being a young woman with mental illness. Nobody will take you seriously if you say you’re sick. You have to fight so hard to be heard.
Brianne: Yes, I have been sent away a lot. And it comes up so much, the number of times that people are diagnosed with mental health diagnoses when they are only there for physical issues. Which is like, I can’t imagine the compounding when you know and you believe that the mental health diagnosis is appropriate, and also the pain is not related.
Elizabeth: Right. And there’s no reason for me to have these fevers, there’s no reason for my CRP to be elevated, there’s no reason for my sed rate to be elevated. Or the arthritis. You can’t blame that on schizoaffective disorder. That’s… for lack of a better term, real. I hate using that word, but yeah.
Brianne: Yeah I know what you mean. I would love to have good words for that because I agree. And I also agree with you that mental health and physical health are so related. But for me, the first time that something showed up on a lab test, something that was measurable, it was like, “Aha! This is a real thing! It’s not in my head!”
Elizabeth: “I told you!” The thing is, wanting a serious diagnosis. After going through so many things and saying no it’s not that, it’s not that. Nobody should pray to have cancer. Nobody should pray for these awful things. But you do because at least then you’ll have an answer and a path and a plan. And it’s a terrible feeling to be hoping to be sick. Well you know you’re sick, but hoping for something so bad. But it’s better than not knowing at all.
Brianne: Yeah. It’s like hoping for an explanation.
Elizabeth: It’s naming the monster.
Brianne: Yeah. So you were diagnosed with fibro, and the symptoms got worse. And you were nearly diagnosed with lupus we’ll say, or diagnosed with near lupus. And what was that process like for this stuff? So for actually going to the doctor and trying to get taken seriously?
Elizabeth: Well, I have lost count of how many specialists I’ve seen. I’ve lost count of how many rheumatologists alone that I’ve seen because they just say no. Except for my last one, who said we’ll try the plaquenil which worked for a very long time. I’ve had many tests, pretty much any test you can think of. Although I have a new one next week that I have never had before, so that’s exciting.
Elizabeth: Of venous something. Exciting, right? So, it’s being poked, being prodded, being used to having everything taken out of you. All of your blood gone and peeing in jars and all those things. But one good thing is in the beginning of 2017, I saw a neurologist who diagnosed me with autonomic dysfunction. And that I believe is 100% accurate. Can explain the fevers. I don’t sweat, which is part of that, lots of different things. So right now we’re trying to figure out, is this all related to the dysautonomia? Or is the dysautonomia secondary to other things? Because there’s such a range the dysautonomia can cause, so you don’t know until you’ve done everything.
Brianne: Right and it’s so hard with a practitioner trying to figure out where to intervene. Because I have some dysautonomic symptoms. I have always been a fainter, I don’t faint all the time it’s triggered, it’s vasovagal syncope. But like… that can happen and there’s nothing really to treat about it. And then when I was really sick from a mold exposure, I had pretty severe POTS. I think I went up to 190 in the doctor’s office from the fake tilt table. So not tilt table, just lying down, sitting, standing. And I’ve always been someone who gets a little bit weird, but it’s never been this extreme, and so it’s kind of latently there, but there’s something else that’s causing it to be a real problem, you know?
Elizabeth: Yeah. Actually, I don’t pass out, but I have other symptoms that led them to believe it. I have the nerve damage and lung disease. You know, I forget sometimes what all there is until I write it all out and then I’m like, “Wow, I am just busted.”
Brianne: A lot’s happening in there. Okay, so I want to make sure we cover all of the medical timeline first. So is there anything in between many rheumatologists and then eventually getting treated effectively for lupus, and then the neurologist?
Elizabeth: I mean, I’ve seen rheumatologists, pulmonologists, neurologists. Maybe a hematologist? Gastroenterologist. Yeah. You learn a lot of new words. It’s hard to remember everything because it’s just been non stop.
Brianne: Yeah. And there are dead ends.
Elizabeth: Yeah, and then you think you can get the willpower to be like, “They can’t find anything, so I’m just going to be strong.” And maybe it works for a while, but it’s never permanent.
Brianne: Yeah, those tests were all negative, so I must be better!
Elizabeth: Yeah, or they’re telling me that I’m faking it so I must be.
Brianne: Yeah, that’s helpful.
Elizabeth: That just happened to me last week in the ER. You know that if I just tried a little harder, I’d be surprised at what I could do.
Brianne: That’s helpful.
Elizabeth: Yeah. Don’t worry about the wheelchair or the falling in the bathroom or all of that. Just try harder.
Brianne: Yeah. That’s really good. That’s some good medical practice right there.
Elizabeth: But that’s the first time I ever stood up to an ER doctor. Because ER doctors are the worst of all the doctors, they don’t understand chronic illnesses at all. And that’s the first time I stood up to him and I was like, “No, you need to help me. I’m here for help and you’re going to help me.” And I got a new medication out of that and a new referral.
Brianne: Yeah, you’re like, “Just send me to the right person.”
Elizabeth: Just do something. I’m here for a reason. I’m not choosing to not be able to use my legs, I’m not choosing to not be able to hold my bladder. Why would somebody choose that?
Brianne: Yeah. And something that I find so difficult, relating to that and what we were talking about with testing, is you get to a point if your tests are all coming back negative or inconclusive, where they obviously just don’t know how to help. And for some reason in the medical community, it’s not an option for them to just say that. For them to just say, “Listen, I believe you and I don’t know the answer.”
Elizabeth: Well, actually, my latest doctor is an immunologist, and he has been trying. I had a deficiency, an IG deficiency, that they think he’s fixed with vaccines and we’ll see. But he doesn’t know what else to do and he’s said that, “I think you should keep looking for answers, but I can not do anything else.” And that was reassuring, almost, because he cared.
Brianne: Yeah, and that’s the gaslighting thing. Are you familiar with that term?
Elizabeth: I am, what do you mean in this situation?
Brianne: So gaslighting is when somebody tries to undermine your sanity, basically, by telling you something that is not true. And over time, you start to believe their side and it really interferes with your relationship to reality, because your body’s telling you one thing and this person is telling you something else. And so you start disbelieving your body in this instance.
Elizabeth: Oh, that’s absolutely it, yeah.
Brianne: So it’s from this play and then a movie that’s called Gaslight. And in the movie/play there’s a woman and she gets married to this guy and he moves into her house. And he starts flickering the gas lighting basically, so that’s why it’s called that. It’s a gaslit house and he’s secretly searching for something in the attic. So he turns on the lights in the attic all the time. And the way that gas systems work is that the more lights are on, the lights flicker every time because there’s a change in the fuel or whatever. And so she’s seeing this happen, and he keeps telling her that it’s not happening. And then he keeps moving her keys and doing other stuff and convincing her that it’s not safe for her to go outside. And it’s because he’s trying to find treasure in her attic or something, I forget. So he’s just trying to convince her that she’s actually not sane by doing all these things and lying to her, and she believes him because why wouldn’t she? And then at the end there’s a cop or something, who has taken an interest in her, who basically just says, “No, your experience is real. That was not true.” And the thing with gaslighting is that because it happens in relationships, it happens in all these different contexts, and when you’re in that experience, when you’re experiencing that and you’re starting to doubt your own reality, all it takes is one person who to say, “I believe you. This situation is bonkers.”
Elizabeth: That’s exactly what it is. After that incident in the ER, I was at home and just saying, “I should just try harder then, I guess I’m not trying hard enough.” And Dustin looked at me and asked, “Are you saying that because of what that doctor said to you? Don’t listen to that doctor, that doctor doesn’t know how you’re feeling. You know how you’re feeling. And what you’re feeling is real.” And you’re right, just having someone say that to you changes everything. But having someone say that you’re faking, it changes everything too. And it makes you second guess yourself, I use a wheelchair now, and it makes me think maybe I should’n’t be using this wheelchair, even though I do much better with it. Because I don’t deserve to have it, you know? That my disability is not valid enough?
Brianne: I’m not disabled enough to use a mobility aid?
Elizabeth: Exactly. That’s exactly it though. It sounds so crazy to hear you say it back to me, but that’s how it is in my head. And I have been a disability advocate my entire life. I’ve done classes and workshops since elementary school. And I’ve been really great at advocating for myself for mental health, but this is different and this is hard.
Brianne: Yeah, yeah. When I have needed a mobility aid, which I don’t right now but I have before. I’ve used a wheelchair, I’ve used a cane, and I always feel like people are going to think that I’m just trying to get sympathy or I’m just being showy about it. Like it’s better if I… whatever it is, walk extremely slowly and stumble, because that’s what my walking has looked like when I needed a mobility aid. It’s such a weird feeling.
Elizabeth: It really is. To limit yourself because of other people’s perceptions, basically is what it comes down to. But it’s not really their perception probably, it’s your perception of their perception.
Brianne: Right, it’s totally… Well, it doesn’t come from nowhere, but it is projected.
Elizabeth: Yeah. But then when I sit in my wheelchair and I can breathe because I’m calm and I can move and fast, and I can do things. Then I realized that no, this is right, this is what I should be doing. I deserve it.
Brianne: Yeah. It’s doing its job, which is making my life easier.
Elizabeth: Yeah. I love my wheelchair. I really do, I’m so happy I have it. I can do stuff now.
Brianne: Yeah. How long have you been using it for?
Elizabeth: Not long. I have been using it regularly for only a month now, actually. It’s a game changer. Totally. It’s wonderful. And, you know, 90% of people who use wheelchairs can use their legs. People don’t know that. People don’t know a lot of things about disability.
Brianne: True. Extremely true. Yeah, and wheelchair use is extremely high on that list. And it’s something that’s come up a few times in these conversations. In the chronic illness community and the disability community, which overlap, but whatever, the wheelchair is the only icon available right now. And I think that makes it especially fraught, as a symbol and as a tool. But it’s true, many people use them who… we need a word that doesn’t have the baggage that “need” has. Because people will say, “Well, people use wheelchairs who don’t need them.”
Elizabeth: Benefit. They benefit from a wheelchair.
Elizabeth: I am much better with one, that’s for sure right now.
Brianne: Yeah, and that’s just the thing. I think all of the language around it is so interesting and difficult at the same time. And it feeds into that faker feeling sometimes. Okay, so you’re using a wheelchair now and it’s great.
Elizabeth: You see, even saying that, I feel like I shouldn’t be saying that. But it’s true, I’m happy with it.
Brianne: Yeah, no, that is great. That’s the point of it. So what else are you up to? So we kind of covered the medical side of things, but…
Elizabeth: Well, 2017 was a wonderful year for me. I mean I got sick, but I was able to really build my photography business. I’m a performance photographer, I do a lot of concerts. I do a lot of drag shows, things like that. I covered the Austin International Drag Festival in 2017, I really built that. I was a new person. Combining the physical and the mental from before, I was a totally new person. I had friends. I went out like all the time, to clubs and stuff. I had a career. It was really great. In November, I did the Austin International Drag Festival, and that was four days and four nights in a row of nonstop shooting. And I don’t think I ever recovered from that.
Brianne: That sounds like a lot.
Elizabeth: It was. I mean, this past year in 2018 I’ve done a lot of concerts, some drag shows, and I’ve covered… the last concert I covered was Taylor Swift which was really cool. But now this month, I’ve had to pass on multiple concerts because I’m sick again. I was the photography lead for the Drag Queen Festival, and I had to pass on that as well, because I… can’t. So I’m trying to figure out where I belong again.
Brianne: Yeah, and so you talked about what ended what felt like a really up phase, we’ll say, whatever the opposite of a flare is. What do you think started that to begin with?
Elizabeth: The plaquenil.
Brianne: Okay, so it was when you went on plaquenil that made a huge difference.
Elizabeth: It made a huge difference and it changed my mind. Well, two things, actually. The plaquenil helped a lot and the keto diet. It changed my life. So far I’ve lost over 50 pounds. My mental health got stabilized, my physical health got more stabilized. I had more energy which gave me more self confidence. I was a new person. I was 100% a new person. Which is why it’s so hard to be sick now.
Brianne: Yeah, yeah. It’s like you feel this is what is possible. And it’s still possible, but it’s not happening right now.
Elizabeth: The hardest part is the uncertainty. That’s the worst part of chronic illness. You can’t count on anything and it’s getting hard for me to plan things for my career, but I don’t know where I’ll be by then.
Brianne: Yeah, yeah. I have so much empathy for that. I was working as an editor before, which was good because I could do it on my own time. So you know, if I don’t want to stay up past nine, nothing is going to require me to do that or whatever, but even so, it has very hard deadlines. And I don’t know when I’m going to wake up and my brain’s not going to be working.
Elizabeth: And you feel like a flake, but it’s not a choice to do it. It’s just you don’t know.
Brianne: Yeah. And for me at least, and a couple people I’ve talked to have said the same thing, once or twice you can choose to push through it. Like healthy people will tell you that you’ve just got to hike up your whatever, put on your big girl pants and do it. And I can do that once or twice, but then I crash harder. It’s never… it’s not actually worth the trade off, even if it is technically true. I don’t think that’s the way healthy people experience powering through something.
Elizabeth: No, health people don’t experience pushing through a night for a really cool show to wind up out for two weeks. Which is what I go through because when I shoot, I am active, I’m an active person. I go up, down, all over the place, I can’t stand still. If I am doing my best, which I insist on doing, then I’m out for at least a week. And then it’s not fair for the people who take care of me. It affects more than just me, you know? It’s my whole support system.
Brianne: Yeah, yeah. And that’s part of what I think is such a hard piece of the tradeoff is that some things… How do you balance what’s worth it? In terms of what is worth it to do even though you know you’re going to pay for it later, and what are the realities of paying for it later, when you’re not the only one paying for it too.
Elizabeth: And you never know how bad it could be. Like after last year’s Drag Fest I was out until March. I was not myself again until March. And that was in November.
Brianne: And what does it look like for you to be out?
Elizabeth: There’s the mobility issues. Pain, lots of pain. I have breathing problems, sometimes to the point where I can’t speak. I just stay in bed. And I can edit from my bed, so that’s good. But it’s very lonely.
Brianne: Yeah, totally, totally. What does an ideal balance look like to you, of all of the things, if it were possible?
Elizabeth: Balance is not my strong point. Go hard and then stay home. So an ideal balance, that’s a hard question.
Brianne: It’s okay if you don’t know the answer.
Elizabeth: I want to do everything. That’s where I’m at. Because I know what it’s like to be able to do these things and that’s all I can think about is when I could do them.
Brianne: Yeah, so it’s like you just try to reinforce and reinforce to get there. Well, then I have a different kind of question relating to keto. So what other things have you done? Like, have you run experiments on yourself, basically. Have you tried more out there stuff or less out there stuff, whatever it is.
Elizabeth: So the keto was A plus. Every time I quit, I come back because I need it. I did try gluten free, I tried dairy free. I didn’t do much with supplements and things like that, because I’m already on so many pills. I don’t want to add them if I don’t have to. Compression stockings help a lot. I wear those every day now. And they really make a huge difference. Nothing too crazy. I do too much research. Far too much research, like I should stop but I can’t.
Brianne: There’s a lot of deep holes to fall down into, especially on the internet. Have you developed any theories for yourself? I know you talked about believing that the mental health and the physical health are really kind of entwined. It doesn’t matter if you think that it is research supported or factual, but do you have one story that you tell yourself about how this came about, do you know what I mean?
Elizabeth: The trauma. It’s all from trauma. I mean, individual flares are because… I can tell you what I did to cause them usually. And when I can’t it’s very frustrating. At least when I can, I can tell myself I shouldn’t have done that. But if I can’t, then it’s just like I did everything right. But as a whole, yeah… I was adopted and I think being born into a situation of trauma, just getting a start in the world like that did a lot to me. I had some traumatic experiences growing up, and then when I was 23/24 my dad died from a heart attack and I was the only one that was home at the time. The culmination of all of that, I think just blew my body up.
Brianne: Yeah, it shocks your system. I’ve talked to a few people with PTSD diagnoses, and an interesting research hole you can fall into is just learning about that and the nervous system and fight or flight responses and how our body can get trapped in those, and that that has real physical repercussions that we don’t always learn about or honor, maybe.
Elizabeth: That’s really interesting, because the autonomic system is what controls the the fight or flight response. And that’s definitely what is wrong with me is my autonomic system. So now I’m wondering, I’m going to have to do some more research because I never put that together.
Brianne: Yeah and something that I don’t know anything about and don’t advocate or not advocate, but I think it’s Episode 3… this is the fun thing about making a podcast. In Episode 3 I talked to somebody named Natasha, who was diagnosed with PTSD and she was diagnosed with fibro, and she talks about some of the stuff that she did specifically that was to manage PTSD. And so to manage the tension basically caused by the stress response. And she was in her late 20s I think, but she said that she started to meditate five minutes a day as a thing to try, and by doing that, by focusing on her body entirely, she just realized how much pain she was in. Because she didn’t know. And so going through some kind of treatment that I forget what it’s called right now, that was about learning to calibrate and manage that.
Elizabeth: Yeah, I can’t imagine the pain I ignore on a daily basis.
Brianne: Yeah! And think about, for me it was coping mechanisms. And I think Natasha talked about, a lot of people talk about this… before I recognized that there was maybe just something going on with my body, I would just drink more. Drink more booze or drink more coffee. And it’s not a longterm solution, but it does turn the pain off in the short term or it’s distracting.
Elizabeth: So I think I’m in a unique situation because I have always been on medication. Medication doesn’t bother me and I think I actively seek it more than most people do as well. As well as actively seeking diagnosis more than most people do. Because it was kind of how I was raised. When people say, “I’m going to be on this pill for the rest of my life!” I’m like, “…Okay.” I’ve been on many pills for all of my life. So adding another one, if it works, would just be a good thing. And that’s why I think doctors are shocked when I’m pushing for bigger treatment. But it’s not a thing to me. I’ve always been under some kind of medical treatment, so just do what you need to do and fix it.
Brianne: Yeah, totally. Like if it works, who cares?
Elizabeth: Yeah. I mean, I’m on meds anyway. Just add a few more.
Brianne: Yeah, definitely. I’m really interested in diet stuff, and I don’t think that it’s a replacement, sometimes people talk about it like that, like if you change your diet, you’ll never have to take any medication again.
Elizabeth: I have a friend who knows how to piss me off, and every time I start complaining about chronic pain and chronic illnesses or people not understanding, he tells me to do a juice cleanse and do some yoga, because he knows that that bothers me. And he says it every single time and it’s just expected at this point. And it’s irritating, I’ve had people say their diets will cure me, I’ve had people say their… the people that come out of the woodwork when they find out you’re sick. It’s insane. But this guy gets it and that’s it’s funny because he’s just doing it on purpose.
Brianne: Yeah, and I think it’s hard, because when people say it’ll solve everything, it undermines the fact that it does help, or it does help many people. So it’s funny, I think there are a lot of people who are on and really helped by medication who don’t want to do anything about their diet because the people suggesting it are anti-medication jerks. And it creates these other weird ripples because it might do nothing, and it might change a different thing. I think all of these things can work in conjunction with each other. But it’s hard. Keto is hard to start.
Elizabeth: Yeah, here’s the thing. I started keto not for those reasons, I started keto because I wanted to lose weight. But people don’t know this. I started keto to prove that low-carb dietd are BS and they can’t do anything. I’ve lost 50 pounds and have better health than before so I proved myself wrong on that one.
Brianne: That’s funny.
Elizabeth: I mean, you’re right, it is a very delicate balance. Because on one side, yeah, you have to take responsibility, but on the same side, when you tell someone to change their diet or whatever, you’re telling them they’re not doing enough for their health and you’re blaming them for being sick.
Brianne: Yeah, it feels like being blamed for being sick and like you’re not doing enough. I also hate it when I’m doing a lot of things right now, I’m running a lot of miscellaneous experiments and this pet experiment that you’re suggesting, whatever it is, drinking celery juice is something I was just seeing on twitter today. Mixing that in with everything is a huge mental burden. If you want to pay for me to have a personal chef slash trainer to come to my house and make sure that all of this happens, then that might be feasible. But as it is, we only have so much brain time to incorporate all of this.
Elizabeth: And people don’t know what you already are trying and how it could interact with the things they’re suggesting. And people think it’s a simple fix. Are you saying I’m choosing to have been sick for this long? Because that’s what you’re insinuating by saying I’m not doing enough.
Brianne: And I also think… this is good, I have many things that I could rant about. I also feel that way sometimes when people suggest a new test that you could get done, or a new specialist that you could see. Going into doctors is also a lot of mental work and it’s not that I want to be sick, it’s that I need to shore up some energy to go and see a new person and get into it with them and hopefully get a good referral or whatever it is.
Elizabeth: Yeah, my partner will yell at me for putting off new specialists and stuff, and we’ll say, “You should do this and this is something that could help. Why aren’t you doing it?” But you know why I’m not doing it, because you see how hard it is to go through each one and you see how expensive they are. I mean, it’s a lot, and they don’t seem to help anyway.
Brianne: Right. It’s more like, often, it feels like you’re doing it so that you can say that you’ve done it like. Yes, I’ve explored this avenue. You don’t have to ask me about it anymore.
Elizabeth: And it’s exhausting getting your hopes up.
Brianne: Yeah, which actually brings me to another question that I have, which is… you live in the States, right? How does insurance play into all of this for you?
Elizabeth: I am incredibly lucky to have been on disability since before age 22 because of my mental health issues. And now, because of all of this I am very well taken care of regarding that. I have medicare and I have disability, and I’m very fortunate. It feels bad to say I’m very fortunate for it, but I wouldn’t survive without it. And so.
Brianne: Yeah, it’s the reality.
Elizabeth: With my father dying and being disabled before I was 22, that means I get survivor benefits. Which means I get his social security which is what I live off of. And it’s hard, knowing that that’s how I’m surviving, but at least I’m able to survive now.
Brianne: Yeah, I think the financial whatever of chronic illness is also really difficult, and everybody is managing however they’re managing. And I think it’s important to see the truth of that. I mean, disability programs are imperfect and also, so when you were working last year, where you are, is there a cap on your earnings in order to stay on disability?
Elizabeth: Yeah, I wasn’t making very much money though, it was more of a hobby than an actual business.
Brianne: But that is a limit, right?
Elizabeth: There is a limit, yeah. And more importantly, I can’t get married.
Brianne: Because then you would be a dependent?
Elizabeth: Because if I get married, then I would lose my income and I would lose my insurance.
Brianne: They are so many extremely frustrating things about the bureaucracy of survival, I’m going to call it.
Elizabeth: That is a really good way to put it.
Brianne: I’ve just talked to so many different people in different versions of it. So whether it’s disability benefits or where their health insurance is coming from and they’ll say, “I’m lucky now. But here are the limits that it puts on me.”
Elizabeth: And you’re always so scared that somebody’s going to see you walking or laughing or something and report you, because clearly you’re not sick because you’re walking and laughing. It’s happened! There’s horror stories about it. We’re supposed to be sick and just sick and nothing else.
Brianne: Yeah, you’re supposed to be miserable all the time. I feel like we’ve covered my main topic questions. Is there anything else that you’ve thought about while we’ve been talking or that you thought about before knowing what the project is?
Elizabeth: Yeah, actually, a couple things. One of them is it’s very difficult to embrace your disability without making it your identity. When I was in high school, I told people that I was bipoloar. I told them so that they don’t tell each other, type of thing. And I made it my identity, and everything about myself was that. And then for a very long time, I refused to have anything to do with mental illness, advocacy, volunteering, all of that, because I didn’t want it to be any of my identity. And so now I’m trying to figure out how can I embrace who I am without making it who I am? And that’s a struggle. Do you know how to do that?
Brianne: I don’t, and I love this question. I actually fell into a reddit hole recently. Have you ever seen the subreddit illness fakers?
Brianne: Okay, well, I don’t recommend it.
Elizabeth: Yeah, but now I’m going to have to go look at it.
Brianne: But I’ll give you the very brief description. It came from some other forum, I don’t know how they ended up on reddit, but it’s a group of people… I know you know what reddit is but it’s a group of people who are specifically talking about a few high profile instagrammers and youtubers who are chronically ill. And they have guidelines so they don’t post about anybody who has less than 1500 followers and they only post about approved people, but basically there’s a couple people that they follow where they believe that something is going on with this person, but they’re really inconsistent in their stories. So, whatever they say about their health doesn’t line up and they are saying that things were happening that don’t line up with how those things actually happen. So this person is saying that they’re epileptic, but what they’re describing is how you might read about a seizure, but not what it feels like to have a seizure kind of. Anyway, it’s a really weird subreddit, and I fell into it the other day, and I read a bunch of it. But one of the things that’s on there is a list of some of the red flags that they see in these specific kinds of accounts. And it was really interesting for me, and this is why I’m talking about it, because some of it was a list of overidentifying with your diagnosis. Because most of the people who are in this subreddit are chronically ill. It’s not random healthy people going after chronically ill people. It’s people who are experiencing chronic illness, who start to realize that this other person is profiting from exaggerating a diagnosis that they share.
Elizabeth: That sounds like jealousy. Like they didn’t capitalize on it enough or something.
Brianne: Yeah, it’s super weird. But it really got me thinking about it. Even as I’ve started this podcast and I do have instagram and I sometimes post about health stuff, although my camera was broken for a long time, so I didn’t. But I post about health stuff on twitter all the time and it’s pretty benign, but I find social media to be such a helpful outlet for just commiserating with people about that. But it made me think of how, especially on the internet, how easy it is to make every single post about your health because you want… it’s making it your identity, basically in the way that you’re saying. And it’s made me think about that, like chronic illness is a part of my experience, and I’m making this podcast now, so I want people to know that about me. But I don’t want to erase every other thing about myself so that I could be seen as credible as a chronically ill person. Does that make sense?
Elizabeth: It does. I’m thinking about my own instagram now. I just started one a couple weeks ago, and I actually made it to force myself to be positive. I wanted it to be a place of positivity. But it’s about chronic illness, disability and the keto diet. And so I talk a lot about it. That’s the topic. I mean, I’m stuck in bed right now. What else am I going to think about? This is my life, I don’t know. I don’t know. It’s very confusing to me, how much you’re supposed to show, how much you’re supposed to limit. It’s very difficult. And I want to be an advocate. But then if I’m advocating, then that’s my life, you know? Oh, goodness. I think the main thing is, we need to stop worrying about other people.
Brianne: Oh, yeah. It’s like serious policing in this one subreddit. It’s serious policing of other people in a way that seems exhausting. Again, I wouldn’t recommend going there, I just happened to fall into a hole and some of the things that it made me think about were helpful. Because I think it’s easy to get… it’s also easy to get negative, which isn’t necessarily what they’re complaining about. But we also aren’t obligated to be positive all the time. Like it’s both, I think.
Elizabeth: Yeah, I want to be real, but also not too real. I want to be positive, but also real.
Brianne: Yeah, and I’ve talked to a few people who are, who do have a second instagram account which is just for chronic illness and who find it super, super helpful. So my own opinion, as opposed to the opinion of anonymous people on that subreddit, is that it’s great. And there’s a great community on there. And for me, that’s on twitter. But I know that it’s there on instagram. And I know people who say it has been so incredibly helpful for them, for all of those reasons.
Elizabeth: I think also what I wanted to say was like we talked about, there are a lot of misconceptions with disability, and I think that needs to be addressed. It’s the largest minority in the world. It is the only minority that anyone could become a part of at any time. And I believe, and most people that I’ve talked to believe, that it is the most ignored minority. Over two thirds of polling places in 2016 were not ADA accessible. That is a right that was taken away from this community. When I used to shoot in clubs, none of them in my area were wheelchair accessible and that’s not right. I think there are a lot of issues that are just simply being ignored right now. And I think our current administration, excuse me, is very much pushing us down, as well as all other minorities. But I don’t think we’re getting enough attention for what we are losing, both in the community and in the schools. I’ve been hearing horror stories lately about how infrastructure, like sidewalks, there are so many cracked and broken sidewalks that people in wheelchairs have to go in the street and wind up getting hit by cars. All the time, because people aren’t caring enough to make their own city accessible for them. There’s a ton of issues, and I really want to start shining a light on this community, my community. Because I have a voice and not everyone does, so I’m going to be using mine more. That was a really long rant about disability rights.
Brianne: No, it’s a great rant. And this will come out after the midterms. And also I actually said part of this exact same thing with somebody yesterday, which will also come out after the midterms. But preexisting conditions is back on the table again as being a disqualifier for insurance and that affects so many people, as if insurance weren’t hard enough. Getting access to good health care, which is different than physical accessibility, certainly, and it’s all important but like, yes, I agree with you. This administration is not trying to lift up people who are living with disability or disabled people, because we all get to choose how we identify in that sphere.
Elizabeth: I have someone who’s premium went through the roof simply because she was diagnosed with depression. I don’t know much about that topic because of my situation, but I need to educate myself more because people are going through that.
Brianne: Yeah. It’s real. And I don’t know how it happens kind of out in the real world, we’ll say, because I feel like I’m also in an echo chamber. Like my twitter is all disabled people and chronically ill people and other activists, and I love it because it’s super informative for me. But I don’t know that other people are learning from that. So I think it’s great. Do it.
Elizabeth: I have high hopes for my future. I try to hold on and trust as much as I can. Positivity. If it comes into my life, I’ll figure it out. And then I’ll figure it out again when I have to do it again.
Brianne: Yeah. It comes in waves. I think that’s awesome. Thank you!
Elizabeth: Thank you.
Thank you for listening to the seventh episode of No End In Sight! I’ve got lots more interviews recorded already for future episodes, so make sure you subscribe on iTunes, Google Play, or wherever you get your podcasts.
I would love to hear your thoughts about making peace with your illness or disability without letting it consume your identity, and you can share those with me by tagging @bennessb on instagram and twitter. And if these stories have been resonating with you, then I’d love to hear your story. I’m realizing that I’ve interviewed a lot of straight cis white women, and I’d particularly love to talk to people with other perspectives.
I also 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 dig into all the questions about working and running a business while prioritizing your 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’m going to be adding a bunch of simple black and white patterns to my collection soon, and I’d love it if you checked us out at digitalartisanal.com.