The Dysunderstood Podcast

Season 2 Episode 5: Sarah’s Story Transcript

Welcome to the Dysunderstood podcast. I'm your host Ella Eastin.

what health challenges are you managing? Um, how did those things come into your life and what brought you to where you are today?

Um, so I first, well, so I've definitely had pots, mast cell, all of that my whole life. Um, but it didn't get like bad and disabling until around 2013. Um, I went home from work.

I thought I had the flu. Um, I had been like taking a lot of days off work for the last year leading up to it, and I was like, something's wrong with my immune system. Um, went home and. I was home for five months. Um, basically just waiting to get better, waiting to get better. Going to doctors, being told there's nothing wrong.

They can't find anything. My blood work's fine. Um, I had a doctor, so I actually went. To my parents' doctor 'cause they had been going in for years and I was like, maybe he'll be better. Um, and he actually did notice that my heart rate was higher when I was standing than it was when I was sitting or laying down.

And he was like, well, seems like normal variation. I don't think there's anything wrong with you. And um, so eventually I came across a endocrinologist in LA who studies chronic fatigue. Um, his main specialty is like thyroid and um. Uh, Cushing's disease. Um, but he was willing to actually run tests on me and he noticed that I had almost no aldosterone.

Um, so that was kind of the first clue. Um, so aldosterone is the salt retaining hormone. Um, and so he told me to start taking salt. Um, and then my boyfriend at the time came across an article about, I was home with pots and was like. Hey, like, this seems like what you have. Um, and I went back to that endocrinologist, well, actually no, first I went back to that GP that noticed that my pulse was different and his response was, they'll call anything a syndrome nowadays.

So that was unhelpful. I went back to the endocrinologist who saw the aldosterone, and he was like, yeah, you have pots. And I was like, cool, thanks for telling me. Like he never mentioned it. Um, and so from there I went, uh, and found a cardiologist through, decided Omni International, who did the tilt table test in 2014, like late 2014.

Um. And then I officially got my POTS diagnosis. Um, and so I was kinda managing the pots for a really long time. Um, I started climbing when I moved to Colorado. Uh, actually backing up, I moved to Colorado because I was coming out here for work and I just felt so much better here, and I didn't know why every time I got, um, off the plane to go home, I was living in LA at the time.

I just like, felt foggy and dizzy and I was just, I couldn't explain it. Like when I went to Colorado, I was like, I feel functional, and I'd go back to California and I wouldn't be functioning. Um, and then with Colorado, I started climbing. I was like able to be way more active. Um, and then around. 2019 or so, um, my health started getting bad again, um, and I was missing more work.

And that's when I saw Dr. Schofield. Um, and so I lucked out 'cause so when I first moved to Colorado, I had gotten on her waiting list. It was a year long waiting list. And then about a week or two before my appointment, I got an email that her clinic had been shut down. Um, and so for anybody not familiar with Dr.

Schofield, she's a decided having a specialist in Colorado. Um, so that was really devastating. But at that point I kind of had my pots relatively well managed, so I was like, whatever. I'm not gonna go to her, it's fine. Um, and then in 2019 I called and I somehow got an appointment the next week. Um, and that's when I was diagnosed with the mast cell.

Um, so, um, and then also she said that I probably have EDSI was kind of borderline for an EDS diagnosis. Um, so anyways, I started managing the mast cell in 2019 and that's kind of where I'm at now, is managing the, um, I. Tore my, uh, hip labrum a couple years ago, which is when Dr. Scofield was kind of like, okay, yeah.

Like that's, yes. Um, and now I keep finding people who have torn their labrum and I'm like, do you have EDS? And they're like, yes. Um, that's so

interesting. Yeah. And is it, is it just

the hips or also in the shoulders? In the shoulders too? Um, I. Luckily have not. I've only torn one labrum so far. Um, a lot of people I've met have torn two or three.

Um, and I'm also lucky because my tear isn't bad enough for surgery. I can kind of manage it with, um, PT and um, just painfully rolling out my SOAs. Yeah. But,

well, that's so interesting that you said that. 'cause I've never been told before that my torn labrums could be related to my hyper mobility. So as we're speaking, I'm learning something about my own medical condition.

Yeah. Somebody was telling me like, you don't tear labrum unless you're either like a really high impact athlete or have Yes.

Yeah.

So, wow.

Well, thank you for that background story. Um, do you mind sharing kind of what the. Treatment process was like, if there was guidance that you received, you know, I am sure it was also a lot of trial and error.

How did that go? Yeah,

so back, uh, 10 years ago when I first started getting sick, it was a lot of like, um, before I knew about the pots, I was kind of going, I was given like, here's some basic guidelines for chronic fatigue. And they were all extremely unhelpful. It was like, eat paleo, and. Go on a walk sometimes.

And I was like, this isn't helpful 'cause I can't get outta bed, but cool. Um, and then when I finally got my diagnosis, um, it was, I kind of started off with, um, taking salt, which was kind of helpful but not helpful enough. And then that turned into, um, fluidic cortisone, uh, which is basically synthetic aldosterone.

Um, and that helped a ton. And um, I'm still taking that now. Um, and then. My cardiologist added on metoprolol, like the beta blocker. Um, and like the fluidic, cortisone, and beta blocker combination has pretty much cured my pots. Um, I don't like qualify for the pots diagnostic criteria anymore unless I'm having like a really bad day.

Mm-hmm. Um, so those went really good. Um, I also tried, um, was it, I don't know how to pronounce it. Midodrine? Or Mitre? Mm-hmm. Um, that one was really bad for me. Um, some people, it's amazing. Yeah. Um, for me it was just like, it. Um, it, it upped my blood pressure way too much and sometimes I would just feel like my head was gonna explode.

Yeah. Um, and so I went off that pretty quick. Um, but I know for some people it can be really helpful. I, I tend not to have the low blood pressure so much as like the high pulse. Um, and so the, um, blood pressure medications have not, like the ones that upped your blood pressure have not been helpful for me.

Mm-hmm. Um, and then I also started an elimination diet. A few like. Right before I moved to Colorado, so that would've been like 2015 ish. Um, and so the one I did was autoimmune paleo, um, or auto autoimmune protocol Paleo. Um, and it was helpful 'cause I learned that I'm very allergic to night chains other, um, and like I was very allergic to gluten.

Um, I'm not anymore thanks to Keto din. Um. But yeah, so I did that. I found out I had a bunch of food allergies. Um, and then once I got the mast cell diagnosis in 2019, I got a lot more specifics about what kind of foods, um, I should actually avoid. And that was really helpful 'cause um, I think I did learn a lot about my food sensitivities from the autoimmune Paleo, but there's also a lot of foods that are like.

Promoted as being really good on autoimmune that are actually really bad if you have MAs cell. Um, like one example is sauerkraut. Mm. Um, kombucha also not great. It's, I have like two steps of it and I feel like I'm drunk because I'm just like, wow. Having an allergic reaction to it. Um, and so, um, also I found out that I'm allergic to alcohol.

Um, it's more just anything fermented I don't do well with. Mm-hmm. So figuring out the food sensitivities has been really helpful. Um, when I first started treating the my cell, I was put on, um, a really high dose of antihistamines, and I had asked my doctor, like, if it's fine, she, she had mentioned in passing, like, oh, this is a really high dose, but you know, maybe it's fine.

And I was like, should I be concerned about it? And she was like, well, I have patients who are on like a 24 7 IV drip of Benadryl, and they're fine. Like, you can't overdose on antihistamines, you'll be fine. Um, and I like. I didn't really think to actually, like with every other medication I've been on, I've researched it extensively to find out like side effects, long-term effects, whatever.

But I just like never thought to do that with Zyrtec. Mm-hmm. Because it just feels so harmless. Yeah. Um, and I found out three years later that taking a really high dose of, um, antihistamines can cause like severe fatigue. Um, and at, at that point I was taking four Zyrtec with three Benadryls at night.

And two Cing and two PEPs every day. Wow. Um, it was a very high dose, um, and I figured out my health had gotten. Worse and worse. Um, and I thought it was really just because of the pandemic, because everything just got kind of crazy. Like I couldn't climb for a few months when the pandemic started. Um, and I'd also, uh, been involved with a climbing accident at the beginning of 2020 that was really traumatic, so I just kind of attributed all of it to just the craziness of that year.

Um, and then found out that it was actually not because of that, it was the antihistamines. Um, so about four months ago is when I got off of that dosage, um, and. I'm hoping to get off of the, like, three Benadryls at night. Um, but that's gonna take some time to kind of figure out how I can sleep. Um, but around the time that I also figured out about the antihistamines, I found out about Keto OFin, um, which is a mast cell stabilizer.

Um, I believe it's mostly used for asthma. Um, and it, it's also used as like eye drops, I think. Um, but you can get it compounded as an oral form. Um, and it's basically like a whole body mast cell stabilizer. Um, it's a little bit rough to get on it. Um. You have to kind of start really low and like add the dosages really slowly.

And every time I would go up a dose, I would feel just kind of awful for a few days and then it would kind of level out and I'd be okay. Um, it took me maybe like six weeks to get up to, I'm on, um, two milligrams now, but it has made a huge difference. Um, I can have gluten now, like most of my food allergies are less intense.

Um, I'm still very allergic to nightshades and a few other things, but, um. It's been really helpful.

Yeah. Well, thank you so much. I, I'm sure that, um, other people have been kind of like looking for direction and answers and every time someone shares their experience, I think it's, it's helpful for another patient to hear.

Yeah. And going back to what you said about, you know, there are certain things that are really promoted as healthy on that autoimmune paleo diet. It's so interesting because. You know, so many behaviors and foods and you know, supplements and all these things are advertised as good for your health and your wellness, but within this patient population, it's like every single person reacts to these different things very differently.

Yeah. And so figuring out like, okay, what is it for me that is on like the spectrum of healthy for normal people?

Mm-hmm. Like

what is it that's gonna trigger my symptoms and make things worse?

Yeah. I think that's one of the things too with being chronically ill is you kind of become a target for a lot of these like.

Wellness brands, um, and just like kind of sketchy wellness practices. Um, I think like, because our medical system is just like awful, it's really, really hard to get, like even if you have the money and resources to see a doctor, you're not guaranteed to see a doctor who knows anything about your illness, um, or who even like, cares enough to find out about it or just, um, and there's just a lot of medical discrimination.

Um, and so I think that there's a lot of these alternative things that are like, um. Kind of targeted towards chronically ill people. Um, like I've gotten Instagram ads for apps that are supposed to cure your chronic pain, which is just like not. Um, and like the advertising is kind of like almost shaming, like, oh, well you haven't tried our, like cognitive behavioral therapy for, um, pain management, so that's why you're in pain, kind of thing.

Um, and I know CBT can be really helpful for managing pain and I don't wanna like. Um, like with any of this, I don't want to minimize, like, some of these things have worked for some people and that's totally valid. Um, and whatever works for you is like, that's wonderful that it works for you, but it doesn't work for everybody.

And there's just a lot of shame of like, well, you need to try this, you need to try that, you need to try this. And like most people who are chronically Ill know what it's like to just try all the things. Um, and it's just exhausting. Um, like a really great example is I have been told. For the last 10 years that I should just try yoga and that yoga would fix me.

But yoga's actually terrible for ess. Um, there's some people who can like, do yoga with ess, but it is actually not super helpful to stretch when you have stretchy connective tissue. Um, and every time I would do yoga, I would go into a really bad flare and everybody would just say, oh, you're doing the wrong kind of yoga.

Like, which yoga did you do? You should try this yoga. And it's like, no, I shouldn't try yoga. Like, uh, the only thing that really manages my pain is dry kneeling or like rolling out my muscles. Um, but stretching 'em just makes everything worse. Um. So,

yeah. Yeah. I'm, I'm learning from you again because I've always been like, I wish I could be a person that does yoga regularly.

Yeah, yeah, totally. It's, I was a professional athlete and I would do a yoga class and it would force me to take a nap afterwards, even though the, the intensity of the exercise is considered a lot lower. Yes. So that's so interesting that you say that. And I've never thought about that for myself. Yeah. But people really are targeted.

I mean, all marketing is targeted, right? Yeah. And this space is unfortunately no different, you know, looking for people's. Needs, weaknesses, insecurities, all of those things. Um, and it's people are really just wanting to be better and so they really are willing to try anything, like you said. And yeah, it's exhausting and people often will tell me, you know, like, oh, I'm in like the break period of my healing phase where I'm taking a break from even seeking treatment.

Yes, yes. That's a thing.

And we're shamed for it. It's like you get to the point where you've tried so many things and you're like, I just need like a month to not try anything and to just grieve and to just kind of. Exist and people will shame you for that. They're like, well, you're not trying hard enough.

That's why you're sick. And it's infuriating.

Yeah. Especially 'cause you're the one living with it every single day. It's like people, it's your life and you get to make those choices. Yeah. And um, it, it is such a shame that, um, people feel that it's okay for them to. Give unsolicited advice. Yeah.

I think the other thing too with like the shaming is like you get shaming like, oh, well you're, you're chronically ill because you're eating too many processed foods.

Like that's why you did it to yourself. But like for as long as it's true that there's people eating processed foods who are not chronically ill, like that is not the problem. Yeah. Like if you can't handle processed foods because your body and processed foods is also just kind of like. A meaningless word because like literally like if you pick vegetables from your garden and chop them up and cook them, you are processing them.

Like, it's just not really, it doesn't really mean anything. It's just kind of a way of like shaming people. Um, but it's just like. As long as there are people who are healthy, who are eating the things that you are blaming our illness on, like that is not the problem. The problem is we are I Ill?

Yeah, because you could take a person like exhibiting the exact same behavior and you know, they don't struggle with these things on a daily basis.

Yes. Or even comparing to people that have like objectively unhealthy behaviors that seem to be able to go through their day without trouble. Um, yes. It's really hard to, to be in the position where you are feeling sick and you feel like you are doing everything you possibly can to feel better. And you're taking the advice and you're doing all the things like you said.

Mm-hmm. And you still feel, you know, 10 steps behind when you wake up in the morning. Yeah. Yeah. So I wanted to go back to the idea of getting unsolicited advice the last time we. Talked, um, that was something that we chatted about and I'd love to hear about any other unsolicited advice you kind of received along the way and how you either learn to, um, I don't wanna say ignore it, but, you know, put up a healthy barrier for it to no longer maybe affect you.

Um, have you come up with any strategies that have been helpful?

Um, I don't know. I don't know if I really have any good strategies. 'cause honestly, my strategy has been if somebody gives me unsolicited advice and doesn't back down when I say like, I've already done that, or That doesn't work for me or whatever, then I just kind of cut them out.

I, that's honestly just a really good way of me, like weeding out people who maybe aren't gonna be great friends to me. Um, when it's somebody who's like, I can't necessarily just ignore, um. Like, I don't know, like a boss or like, um, a family member or something. I'll just kind of smile and nod and then just go find someone else to talk to.

Yeah. But yeah, I mean, it's just really hard because it's, it's just a lot of weighing like, okay, is it worth the emotional energy it takes for me to confront this person? Yeah. And like make them upset. I mean, I don't even wanna say make them upset. I'm not the problem, but, um, it's just kind of deciding like, is it worth it in this moment?

Do I have the emotional energy to have this conversation or do I just wanna like, let it go and move the conversation forward to something else? And it's usually I just don't have it in me to do it.

Yeah.

Um, but yeah.

Yeah, like you said, choosing kind of when to pick your battles. Um, but it is unfortunate 'cause oftentimes our body just picks it for us.

Yeah. Um, and you, this is something that I'd love for you to speak on. Mm-hmm. Um, your. Kind of personal development as an advocate for the disability community and yourself. Um, yeah, speaking up for yourself is like, like you said, can be challenging in a number of ways, including the energy that's spent, um, and the emotional toll that it takes.

Um, yeah. So please talk about your, kind of the evolution of your advocacy and, um, your personal journey.

So I think like growing up, I've always been somebody who internalizes things, so I, it was kind of just ingrained in me that like if somebody's upset about something, it's my problem to fix. Um, and so I've always been like very passive.

Um, it's always just been really easy to walk all over me. Um, and I think so. Around, I don't know, 2016 or so, I was on a, a disability leave from work. Um, and I decided, okay, I think I need to go to therapy. Um, and so I went to therapy expecting to like get coping methods for dealing with chronic illness and that sort of thing.

But I actually learned that I just like really needed to learn boundaries. Um, 'cause that was just something I was never really taught. Um, and I think that's been one of the most important things, like for me as a chronically ill person is just learning like my needs matter. Like if I am too tired to interact, um, it's okay.

Like I can cancel my plans and if people don't respond well to it, then like those aren't people who care about me. Um. I think another thing too, um, that just kind of adds layers to all of this is, um, so I also have a DHD, which a lot of us have. And then actually two weeks ago I was officially diagnosed with autism.

Um, and so those are also other competing factors. Um, and I'm still kind of like trying to detangle like, what are my autism needs? What are my A DH ADHD needs? What are my chronic illness needs? Like, am I exhausted by people because I'm physically tired? Is it because I'm tired of masking? Um, and so I kind of just lost my train of thought.

Where was I going with this? Um. But yeah. Um, oh yeah, yeah. Boundaries and advocate. But yeah, so I think like, so the first step was definitely like learning to advocate for myself, learning boundaries, learning that like doctors are not the ultimate authority figure. Um, doctors are human and they have their biases and like.

I don't wanna like say that I know more than my doctors, but a lot of times I know more about my specific illness than a lot of the doctors that I interact with. And so I think learning, like I need to advocate like, hey, like I want you to run these tests on me, um, has been really helpful. Or like, I would like to try this prescription.

Here's all the reasons why. Um, rather than just expecting the doctor to come up with something. Um, and then I think too, like at some point I started following a lot of disability advocates on, um, like social media and I think just kind of. Like, um, just like immersing myself more in the disability community has kind of really helped me, um, to kind of just understand like how.

Like, uh, what is the word? Just basically just like how these systems are working against us, um, and how ableism works against us. Um, so there's, um, the model that a lot of disability advocates push for is the social model of disability, which is basically saying like, disability itself isn't the problem.

It's living in an ableist world. That's the problem. And kind of just reframing a lot of like, okay, like I am struggling with work. Like not because I'm a failure and not because I am bad at my job. I'm struggling because my work is like meant for an able-bodied, neurotypical person and like just kind of.

Like, I think just kind of, just knowing that was really freeing for me and realizing like, I don't need to put all of my energy into like keeping up with able-bodied people. Like it's okay to be disabled. Um, and like disability isn't a bad word. Like, and just kind of, I think just learning that and like learning about the disability justice movement has really been healing for me in a lot of ways.

So,

yeah. Well, thank you so much for opening up about all of that. Um, it is pretty amazing how much, um. We're able to learn as a result of our experiences. And at least personally, this is not something that I think I would've randomly picked up one day and, you know, taken an interest to, unless it, you know, personally affected me.

And yeah, that's something that I've also had to work through, like that shame of like, why didn't I care about this beforehand? Yeah. Um, but I had a lot of learning and growing to do as a person. Um, and for that reason, like I'm grateful for the position I'm in because of, um. Being able to expand my understanding and empathy for so many other people in the world.

Yeah. Well, I would really enjoy hearing about, um, your experience of navigating through your world of disability. And, you know, you, you mentioned that you joined a lot of, or you, I guess, explored social media and, and different platforms, um, to kind of, um. Join the community in a way. And last time we spoke, you talked about the feeling of being disabled enough.

Mm-hmm. Um, to be able to identify as part of the disability community. Um,

can you touch on that idea? Yeah. Um, I think with, when it comes to being invisibly disabled, I think there is a lot of imposter syndrome. Um, like when you are invisibly disabled and you move through the world, people do not see your disability.

And in some ways there's a lot of privilege with that. Um, people talk to you. Um, really differently if you are visibly disabled. Um, people treat you really differently in those ways. Um, but also there's just this feeling of not being seen. Um, and I think a lot of us really struggle with people just not seeing what we're going through.

Um, and so I think like there's just a lot of like, um, I know last time we talked about like how I feel a lot of times in chronic illness spaces. I feel like there's a lot of internalized ableism and there's just a lot of like trying to prove yourself. Um, which I think is really understandable. Like, I think that, um.

When you exist in a disabled body and people cannot understand your experience, I think that there's just, um, what am I trying to say? Just I, I think that there's just a lot of like, um, like, I guess I've already said this, but just the need to be seen and, um. So I think that kind of comes out in a lot of ways.

Um, in the chronic illness community, sometimes it can feel a little bit competitive. Um, like sometimes it feels like one person's like, oh, well I have this symptom and that symptom, and somebody's like, well, I have that. And then these other five symptoms, and it's like, I was bedridden for like three days and it's like, well, I was bedridden for five.

Like that kind of thing. Um, I think that kind of happens a lot in chronic illness spaces and um, and yeah, I think it's a lot of it just comes from the struggle of like wanting people, like I think that, um. I think sometimes people who are chronically, ill think they're almost like taking an identity. If they call themselves disabled, that's like not theirs.

But that's, I mean, if you are occasionally bedridden, or even if you're not bedridden, if you're just like struggling with things in life in ways that people who like are not chronically ill, do not like that is enough to be disabled. Um, and so I think like. Recognizing that like, um, like your struggles are real and your illness is valid.

And I, I think that that's like something that a lot of people struggle with. And the other thing too is a lot of chronically ill people don't have access to a diagnosis. Um, you first need to have like the money and resources to see a doctor, and then you have to like see a doctor who actually cares and actually believes you.

Um, and like. If you're a woman, it's much harder to get a diagnosis. Um, if you are multiply marginalized, like if you're a woman of color, if you're a queer person, um, just all of these other identities on top of that make it harder and harder. Um, if you're fat, it's really hard to get a diagnosis because doctors will tell you that all of your symptoms are based off of, um, just your weight, which.

There's really just no evidence for a lot of that. Um, and so I don't feel like the most qualified person to talk about this. Um, and I extremely recommend for anybody who's like, interested, uh, to listen to the maintenance based podcast. Um, they do like really deep dives into the health and wellness. Um, just.

Like the problems with diet culture, um, specifically they have an episode that's called, is being Fat bad for you? And they talk more about like, um, all of the like so-called research that is linking, um, fatness to ill health is really, really flawed. Um, for one thing, like. You can't really research diets.

Um, because the way that it works is you have people self-reporting what they're eating. Yeah. Um, and a lot of times people don't know what they ate. They can't remember or they lie about it. Like there's just, it's almost impossible to, um, do that. But the other problem is that with, um, a lot of like diet research and, um, research around like weight, um, is really just, um, they don't take into account like class, uh, race, like, um.

People living in pollution, um, stress, like all of these other factors. Um, and so basically just the medical field is extremely biased and is pretty behind when it comes to, um. Just like how fat people are treated. Um, and like fat people are more likely to like, um, like if a fat person dies in a car accident and then they're autopsied, they're significantly more likely to have like undiagnosed cancer.

Um, 'cause doctors won't give them screenings. Um, I actually had a, it was a friend of a friend, um, passed away recently. She went to the doctor a year ago saying, uh, she had back pain. The doctor dismissed her and said, just lose weight. And then, um, she went back a year later and was like, Hey, this back pain is really, really severe.

And she had stage four bone cancer and she died like three weeks later. Um, and that happens all the time. And so I think, um, within chronic illness communities, there's, in addition to a lot of internalized ableism, there's also a lot of internalized fat phobia. Um. Like on the, um, the subreddit for MAs cell, I see posts about like Ozempic and Wego, is it Wegovy?

I don't know exactly how to pronounce, but essentially the weight loss medication that's become like TikTok famous. Um, so back to like, again, back to the end space, they did a really great episode on Fen, um, which was a weight loss medication in like the nineties and two thousands. Um, but essentially like.

Every time there has been a miracle weight loss drug, um, there have been really severe consequences, um, of taking the drug. And also most of the time, um, even if people do lose weight, they almost always gain it all back, um, as soon as they're off the drug because it's just like wrecks their metabolism.

Um, and I'd like to hope that like Ozempic isn't gonna be the same. Um, a lot of people died from Fen Fin. A lot of people are still dying from complications that were caused by Fen Fin. Um, and I really hope it's not the same for Ozempic, but it worries me a lot seeing, um, especially with MAs cell, where people are so sensitive to medications and people are so sensitive to like.

Any kind of change in their body. Um, it just makes me really sad to see people like willing to try an experimental drug. Um, also not to mention the fact that, so for anybody who's not familiar with ozempic, um, it was a, um, it or it is a diabetes drug, um, and was found to have weight loss, um, effects for people taking it.

Um, and it basically, so my understanding is that it kind of went viral on TikTok and, um. Um, and people started just taking it for that. Now med spas are selling it. Um, it's an off-label usage and it caused a shortage for people who actually need the medication. Um, and so that's already a huge problem. Um, but also just to be taking an untested, like off-label usage for weight loss.

Um, yeah, it's just. It just kind of worries me. Um, and also seeing things like a lot of people in the S Cell group, I'll see people post things like, oh, like Keto Din, which is a medication that I just started somewhat recently. A lot of people are like, oh, weight gain is a side effect, so I'm not gonna take it.

But then a lot of other people are like, this changed my life. I got my life back because of Keto Din, but I decided to go off it because I gained 20 pounds. And it's like, why? Like, I just, it just makes, it's just really sad to me. Like, um, I would gain 20 pounds any day to get my life back. Um, I would gain 50, get my life back.

It's just so ingrained and I, I, again, I, I, I just wanna say like, I don't, like, I don't judge anybody who is choosing to like, go on medication for weight loss or not take a med. Like, I understand Fatphobia is so deeply ingrained in our society, and it's just like inescapable. Um, like you're less likely to get jobs if you're fat.

You're like gonna be treated horribly by doctors. Um, and so I just, I completely understand why somebody would make those choices, but it's just like so harmful. Um, and yeah. Yeah.

I relate to the sentiment that, you know, it, in order to be able to function at the level that I was functioning at before, um, I would be willing to give up a lot of things about my physical body, I guess, that are considered, um, desirable by society.

Um, and it is something that I don't know that I would've said a long time ago until I went through the experience. Yeah. Um, and I'm still learning every single day to like. Be aware of the thoughts that I have about myself and others. Mm-hmm. Especially as I like enter the profession of medicine. And it's something that, like you said, just makes me really sad because so many of us are working towards.

You know, either improving research in medicine for people to improve their quality of life, um, or, you know, stand up against certain policies and like systemic issues that cause people's quality of life to be lesser in the first place. And, um, it just, you almost wish that people would take any opportunity they have to feel better and not.

Be so held down by those concerns. Um, yeah, it's, it's hard. And I think,

oh, sorry, I didn't mean to No, that's okay. But I also think too, that a lot of people who are chronically ill and not thin are, they just receive constant messaging. Like, well, if you just lost weight, you would, you wouldn't be so sick all the time.

And so I completely understand where all of this is coming from and like, I don't, I don't wanna be, I don't wanna come across as judging, like it's, um, it makes total sense, but it's, it takes so much unlearning and just like years of processing, like. Our relationship with our bodies to like get to a point where we don't wanna punish our body for the size it is anymore.

Um, and yeah, I think a lot of people, especially people who are more recently, um, becoming chronically ill are like, um, it's just, yeah, it's just really hard and

yeah. And when I first got sick, um, I actually gained, uh, probably close to 20 pounds and mm-hmm. It was act, it was one of the first signs that. My body was like fighting something.

Yes. Yeah. And it was like in constant fight or flight. So it was like holding onto every ounce of energy that I gave to it because yeah, it was just on its last leg. Mm-hmm. And you know, that was a big like hurdle for me to get over personally and be like. Okay. Like my body is protecting itself. Yes. And this is a protection, like a coping mechanism for my body to be able to like get through the day and be able to tackle all the things that I'm forcing it to do on a daily basis.

Yeah. And I slowly learned to like be more grateful for the changes that my body was making without my permission, because it was fighting something that I had no idea what that was. Yeah. And I immediately was, you know, at first it was like, well, what do I need to do to like make sure this doesn't keep getting worse?

Or what do I need to do to like, yeah. Um, you know, prevent this from happening again. Mm-hmm. And those thought patterns like are pervasive among everyone, not just the chronically ill community, but when Yes. Yeah. You tie, when you intertwine that with, you know, poor health because of another reason, I, I think it makes it really, really difficult to navigate.

Yeah, absolutely. Yeah. Um, and I think too, there's, um, a lot of, a lot of times we don't distinguish between like causation versus something that happened as a result of something. So like. Um, I think a lot of times we're like, oh, that person gained weight. That's why they're sick. When it's really just like, no, this person gained weight because they are sick.

Um, and that was something I experienced too when I was first, um, way back 10 years ago. Um, I also gained probably 20 pounds. Um, and I had doctors telling me, well, it's probably just the weight gain. And I'm like, I was sick before this. Like, this is like. I'm not sick because of this, like, and they wouldn't listen to me.

They would just tell me like, oh, well you need to lose the weight and then, and then we'll talk about it. It's like, no, putting your body through weight loss when your body is already fighting for its life is not going to make you better. It's just not,

yeah. Yeah. It's a good reminder for me to like, you know, look at the full picture.

'cause until I was given the opportunity to have like my labs drawn to, for them to look at how my hormones were mm-hmm. Out of whack. Mm-hmm. It was like, that was also something I was told and I was a professional athlete swimming like four hours a day and I was like, you can't ask me to like restrict any further.

It's unhealthy. Yeah.

Mm-hmm. Um,

so that's kinda when I knew, I was like, this is something that. Someone outside is just not gonna understand. Um, no one else is having the experience that I'm having and no one else is kind of living in my body. Yeah. Um,

so. And I think too, um, there's so few doctors who have experienced chronic illness.

Um, I think like the medical field, um, I mean you obviously know more about it than me, but just I like, I feel like, like the residency is kind of a hazing process. Um, it's just extremely difficult to become a doctor if you are also managing chronic illness. And so I think a lot of doctors just can't understand.

Um, and so I think it's like when you have bias education, um, and then you also have like. Doctors who have never experienced chronic illness, you just get like a really bad combination of somebody who can't possibly understand what you're going through. Um, obviously there's plenty of doctors who actually care, listen to their patients, and genuinely want to do their best.

And I'm extremely thankful for those doctors. Um, I've been lucky to find some of them. Um, but there's just so many more who just like can't really understand and don't want to.

Yeah, yeah. There's like so many restrictions on like. How much time they can spend with each patient in addition to like, yes, being so specialized now into what they're keeping up with in the literature that, um, I think it's patients like us with, you know, um, a file folder that's quite large of, you know, medical records is like a little bit too daunting for most.

And like you said, they are human. And um, you know, one thing that I was really adamant about when I was looking at medical schools was. You know what place is going to be receptive when I put in an application and talk about my experience with chronic illness and disability. Yeah. And you know, I got advice from others that.

Mixed advice. Like some people would say, you know, this is exactly what brought you to medicine. So I think it's important that you're like open and honest about that and, and they should know that like you are capable of so much regardless of, you know, the fact that this is something that you're still managing.

And then I also got the advice, you know, coming from also the right place and coming from experience in the medical field. Like maybe that's something that you shouldn't really talk about in your application. Mm-hmm. Um, and to me I was like, I appreciate the sentiment because like, you want me to be accepted and you want, you know, me to.

Be able to pursue this dream of mine. Yeah. But I was like, I don't wanna be at an institution that doesn't accept that. Yeah. And so that was something I went forward with. Um, and people were nervous about it and I had very few schools to choose from. Um, at the end of the day, and I'm at a place that, you know, still has its challenges, but is at least willing to entertain that discussion.

Yeah. Um, which I'm grateful for.

And that's honestly just unbelievable that that's even a thing. Like you would think that it would be a strength. To have experienced that, but it's just like I, I think that's like a really good picture of just how our medical system is. It's like mostly able-bodied people telling disabled people there's nothing wrong with them.

A lot of that. Yeah.

Yeah. And you know, the pandemic I think has been one thing that has made medical education a lot more accessible and something that I'm really grateful for. Mm-hmm. Um, having the opportunity to like learn online from home for the things that you don't need to be doing hands-on work for, I think is.

Like incredibly important to extend to more people. Mm-hmm. Um, and I think that, you know, institutions are realizing too, like, oh, this is another factor of diversity that we need to take really seriously. Yes. Yeah. You know, I always kind of joke, I'm like, if cancel culture, culture is like the way that gets them to change this, I guess I'll, you know, be like grateful for that.

But I wish that it wasn't the case that that wasn't the Azure that was like in. Yeah, because like I think your empathy is a result of your experiences because we are human, because we are inherently a little bit selfish. Mm-hmm. Um, and mine has absolutely grown as a result of my experience. Yeah. Can you talk about your personal growth or what you feel like you have learned, um, about yourself and about life throughout this, you know, more than decade long process of, of living with and managing your, your illnesses.

Um, I don't even know where to start. Um, let's see. Let me think for a second. Um, wow, my mind just went blank. That's okay. You have time. Yeah. So I think a big part of it is, um, I think learning. To advocate for myself and learning to love myself, which is like such, um, not always the most helpful advice. I was, you know, a lot of chronically ill people are told, well, have you just tried loving yourself more?

And like, or somebody with mental health issues if you just tried not being sad. Um, but I think just like learning my needs are valid, um, I think too. I, uh, like my political leadings have very dramatically changed. Um, I grew up in a very conservative family, um, and I grew up my, my parents only having Fox News on.

And so, um, for a lot of my life I just kind of mirrored their views and I think, um, and I've lived like a very privileged life, um, just especially like as a white woman, um, working. Um, like I went to college, um, I got a job right outta college. Um, and so I had like a lot of privilege in that and I think, um.

I think chronic illness gave me, um, just a much deeper empathy for people, um, on the margins. And I don't want to equate chronic illness with other kinds of marginalizations. Um, but I think it just really opened my eyes of like, okay, like I'm experiencing this thing that I know is real and other people are telling me it's not real, um, or telling me to get over it or whatever.

Um, I think that kind of radicalized me. Um, I am now, I mean, I'm very far left now, um, but I think. I think really it just gave me a lot of empathy and um, has kind of just like the anger. I, I'm not very, like, I've gotten a lot better at advocating for myself, but I'm not like amazing at it. It still is very difficult.

It uses a lot of emotional energy for me. Um, and so I think I take a lot of that anger and frustration and kind of apply it towards fighting for other people. Um, and I think that's kind of like my outlet. Um, and just kind of like, um, yeah. And so I think chronic illness is really like, um. It's just been like, I don't know who I would be without it.

Um, and

yeah, that's so wonderfully said. Uh, and I, I absolutely, um, I feel the same way. I think like my life goals have drastically changed as a result. Um, in addition to like the way that I have now hold myself to a standard now of how I treat people and give every single person the benefit of the doubt, and, um, just opened my mind to the idea that, you know.

Every single person is facing those challenges that you can't see. And yeah, like you said, being just more empathetic.

Yeah.

What advice would you have for those stepping into the chronic illness and disability community? Um, what are some of your favorite resources? I know you mentioned one podcast. Um

mm-hmm.

What are kind of your go-to things that you feel like are helpful in navigating this experience?

I think like. When our culture thinks of disability, we think of like hopelessness. Um, you just like, we just have such a terrible view of disability and like, I think what we don't get enough of is disabled joy.

Um, and I just think there really is so much disabled joy. Um, even just like I, I got like a children's book for um, I have two nieces that are one and three, um, and I got 'em a book called Mama Zooms. And it's just this like really joyful book about a mother, um, who's a wheelchair user. Um, and it's just basically about like this little kid like riding on her lap in the wheelchair.

It's like, mama zooms me through space or whatever. And like, um, there's just not enough of that. And I think like when becoming chronically ill, I think it can feel really hopeless. Um, and I think a lot of us, um, are kind of living with a lot of trauma from that. Um, and I think, and I, I, I also, I don't want to say like, oh, you just need to have a positive attitude because like, that's not, that's not it.

Like we need to grieve, we need to process our trauma. We need to be allowed space to like. Just be not okay. Like that's, I think, really important. But I also think that like, I think just like, I don't know, I, I just like a lot of, um, like various Instagram accounts I follow and stuff like that. Just have like such a focus on disabled joy and, um, like, I think just like, just knowing that like.

We can still experience joy. It might be different. Like, um, me, like in the last few years, um, I, my mast cell issues have gotten worse. Um, I used to be climbing outside all the time. I used to be, um, like climbing mountains a lot. Um, and that looks different for me now. Um, I can't really do the same things, but I can still find joy in other things.

Like, I recently started paddle boarding, um, and it's like very pots friendly. You can sit down and, um, just kind of enjoy being on the water. Um. And I love it. Um, and like there's so many things that you can find. Um, and yeah, I really think that that's like such a big thing, um, is just kind of, um, yeah, I think just like finding like, um, oh, advice.

Yeah. I think advice would just be like finding the things that bring you joy and finding ways to continue finding joy, um, and disability. And then I think also there's just like the standard advice of like, do your research. Um. Fi like, I think a big thing is I won't go to a doctor unless I have a personal recommendation from somebody.

Um, generally somebody who's chronically ill. Um, and that's been really helpful for me. Um, and then I think another piece of advice is, um, doctors are human. They could be wrong. Um, and I think a lot of us know that, but not all of us do. Like there's a lot of people who are new to chronic illness, don't, haven't experienced like how broken our healthcare system is.

And so they'll just take what a doctor says as fact and like, yes, they're knowledgeable, but they don't know everything. Um, and so get a second opinion, get a third opinion. I think the average, what is it, the average number of doctors that POS patients see is something like eight before they get a diagnosis.

Yeah. And it's about almost six year diagnostic delay.

Yeah. So I think like, I think a big thing, and I, I guess if you're finding misunderstood, you probably already know that you have pots. But, um, I mean, I think just like knowing that you know your body better than anybody, you know what's going on with your body and you know when something's wrong.

Um, I think that's really important is just like. Other people can't tell you what's going on with your body. Only you can.

Yeah. Trusting your instinct is like a really challenging thing to learn. Um, you know, so many people in this community are, are young women. And for a long time, you know, as children obviously we're listening to people in positions of authority, like our parents and our teachers, and we're kind of taught, you know, if you wanna be successful in this world, you know, you do what you are told and you fall in line and all of these things.

Mm-hmm. And you know, if this comes up in your life and you're managing a health condition, it's like. Kinda a drastic change to be like, no, I'm in the driver's seat. Yeah. When you're used to being the passenger in the backseat.

Yeah, exactly. Yeah. And I think, um, yeah, I mean, not that we're exactly on the subject, but, but being chronically ill under capitalism is terrible.

It is not built for us. Um, and I think there's just so much unlearning that needs to be done when you first, um, become chronically ill. Um, the disabled community is like the only marginalized community that you can just become a part of later in life. Um, and I think it's something like one in five people are disabled.

Um, yeah. And the world's just not built for us. It doesn't matter how disabled you are, there's no such thing as disabled enough. Um, it's just I don't think our world is really built for any of us. Like humans are not meant to work nine to five and then still not be able to buy food and then be stressed all the time.

Like, but it's especially not built for, um, disabled people. And so, yeah. Um, I think that's honestly one of the, like most healing things for me is when I like started really understanding just how like hostile this world is. Um, to disabled people. I think that was just really healing, um, to just realize like, it's not my fault.

Yeah. Yeah, that's true. It's like you're like, you can't blame yourself for the position that you're in. It's more of like, you are in this position and now have to navigate it, but it's not that you are the problem.

Yeah. Um,

which like we've talked about this whole time, it's like you're given advice. From, you know, companies that are trying to sell you something, or physicians or even your loved ones, like they're giving you advice to, to change something about yourself, to make yourself better.

Yeah. Um, so I have appreciated so many of your insights and, um, what you said about, you know, finding disabled joy. I think it's so amazing and important that we have these people out there spreading that message and, and pushing back on. You know, the societal assumption of hopelessness and despair, um, or whatever other negative adjective you wanna come up with that has been placed on this community.

Um, you know, i I, in the description of this episode, I'd love to have you share some of, um, those accounts or, you know, any sort of resource that you recommend that, you know, provides you a source of joy. Um, yeah. 'cause I do love that mission. And the point of this community is to connect a group of people that have shared experiences that may be able to like, support each other in, in whatever way, um, is helpful.

You know, whether it's connecting with someone face to face or just simply listening to the stories or, um, whatever it may be. But also finding a, a sense of strength and hope and, and realizing like. Wow. There are other people experiencing this. They, you know, are going through something similar to me. I'm not going through this alone.

And they also have found, you know, meaning through this process and have a sense of joy and in every person's source of joy may be different. Um, yeah. But seeing that that's possible I think is really, really important. Yeah. Well, Sarah, thank you so much for your time and your energy. Um, if there's anything else you want to talk about, I think that there's definitely room for that.

Um. Is there anything else that you might wanna touch on before we,

um, let me see if I have anything written down. Um, I think maybe one other thing that might be good to talk about is just like medical discrimination in general. Um, and just I, it's like another thing that I don't feel fully qualified to talk about and there's a lot of like really great resources that cover it more, but, um.

Yeah, I think like, um, a really great illustration of that is, um, back in 2020 when, um, I think we talked about this before, when, um, just decided on the international, uh, they posted on their Instagram a collage of, um, a lot, a bunch of people, and it said like, the faces of pots and they had maybe one or two people of color in it.

Um, but it was very white. Um, and I think that like a lot of times. Pots is kind of like viewed as almost like a white girl, um, syndrome or, uh, illness. Um, and that's just not true. It's, it doesn't really discriminate. It's not, it's not something that occurs more in certain populations and not in others.

It's really just an illustration of who gets diagnosed. Um, and so, uh, we talked a little bit about like having various marginalizations will make you less likely to be taken seriously by a doctor. Um, like there's been studies, um, and, uh. Don't quote me on these results because I might have slightly remembered them wrong, but, um, just generally, there's been studies that have said like, doctors are more likely to say like fat patients or black patients or queer patients or whatever, um, are like, they're more likely to say that they're difficult patients.

Um, they're less likely to believe their pain. Um, there is a study at some point that found, um, I don't remember the specific numbers, but it was in the ballpark, um, when. Doctors were seeing, um, male patients and female patients with the same, um, the same symptoms. They were only about 10% of the time, they didn't believe the men.

Um, but they did believe women about 80% of the time. Um, wow. And yeah, so I mean, there's a lot of that. Like, uh, there is. An article I saw recently that was talking about how like, um, period cramps can feel as painful as a heart attack, and yet women are just told to deal with it. Um, there was an a, a podcast recently.

I actually haven't listened to it, um, but it's on my list to listen to. I was talking to somebody about it. It was about a, um, chronic pain clinic, or not, sorry, not a chronic pain clinic. A fertility clinic where one of the nurses.

Did you listen to

it? I did,

I

did. Okay.

I I'm gonna link it in this episode.

Um, okay. I highly recommend it.

Yeah, I've been putting it off. 'cause I'm like, I don't know if I wanna listen to this, but, um, correct me if I'm wrong on any of this, but it was one of the nurses was stealing the pain medications and not giving women pain medications for their egg extractions. And women were just in excruciating pain and the doctors were just like, oh, that's just women.

Low pain tolerance for years. Yeah. For

years. And, and you, you know, you have biological females as your sole patient population. So, um, yeah. To anyone listening, I, I, I do recommend it. I think it. There should be trigger warnings? Um, yes,

absolutely,

because, you know, people have experienced trauma of all kinds.

Um, and it's a really emotionally heavy subject. Um. But I think a really great reflection on all the work that we have yet to do to managing women's pain properly. And yeah, just believing their insights in general. Yeah.

Yeah. And I mean, like, as we said earlier, it gets worse with more margin marginalizations like, um, the maternal mortality rate is significantly higher for black women, um, than it is for the general population.

Um, 'cause doctors are less likely, there's doctors who genuinely still believe that black people have less sensitive nerves. Um, that is a belief that is still a thing. Um, and. They are less likely to believe black people and more likely to write that they are pain se uh, painkiller seeking or drug seeking in their charts.

Um, and so I think, um, yeah, I think that that's just an aspect of chronic illness. Like there's just so much privilege in having a diagnosis. Um, when I saw Dr. Schofield for my mass cell, um, the, uh, the first appointment was a three hour appointment and it was $2,000. And I think that her prices had gone up, um, and her wait list has gone up, uh, uh, since COVID.

She has a two year wait list. Um. And she's there, there's a lot more doctors who are familiar with pots. Um, but she's one of the very few, um, doctors who specialize in it. Um, there's just so little, um, like there's just so few doctors who really specialize. And so I think, like, I, I don't really know how to fix this, um, outside of like universal healthcare and completely dismantling our healthcare system and rebuilding it.

So, you know, just a small, simple, just a little thing. Um, but yeah, I just, I think that like. It's not talked about enough, um, in chronic illness communities. Um, just healthcare equity in general. Um, uh, just, and I think a lot of it is because a lot of people who get diagnosed with chronic illness are people with a lot of privilege, and so it's like not as obvious to us.

And so I think it's just something that we all need to be aware of and like

Yeah.

Um,

yeah, and something that I am the upcoming generation of, of doctors, um, needs to be aware of. I think that. Medical education is slowly evolving in, in front of our eyes, but, but not at the rate to, to keep up with all of the challenges that like health inequities are causing on a daily basis.

So, um, just always a reminder that there's so much progress to be made. Um, and that's like an understatement. Yeah. There's no, there's no way to, to fully, um, you know, explain the weight of the situation.

Yeah.

Yeah. Well, I really, really appreciate you sharing your time and your energy with us. Um, there are so many people that I'm sure have benefited from, um, hearing everything that you've had to share, and I appreciate you discussing all the ways that you've learned as a person living with chronic illness and disability and being so open about the challenges that you face.

Um, and I'm really grateful for your contributions to this community and continuing to be an advocate for yourself and for so many others.