The Intersection of Gaslighting and Ableism - Part 1

Mary is joined by Emee for this episode.

In part one of this interview, the two talk disability, chronic illness, going undiagnosed and the gaslighting they've both dealt with in medical settings.

Emee is a disabled fiction and non-fiction writer, vintage jewelry maker, and business owner. She has thirteen chronic illnesses and is neurodivergent. She aims to build a life that is a culmination of all she loves while refusing to sacrifice any part of her cultures, her writing, her disabled pride, or her affinity for vintage fashion. She navigates life with a peculiar sense of humor, a cane, and desserts.

You can follow Emee on social media here and here.

The Politics of Disability was named Best Interview Podcast at the Astoria Film Festival in both October 2022 and again in June 2023.

Transcript

[music playing as Mary speaks]

Mary: Hello everyone, and welcome. My name is Mary Fashik. I am the founder Upgrade Accessibility and your host. I’d like to thank you for joining me today, at the intersection of disability and politics. The road ahead can be a bumpy one, so buckle up and let's navigate this journey together.

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Mary: Hello, Emee. Thank you for joining me today. Would you please introduce yourself to our audience?

Emee: Hi, my name is Emee. I go by she/her. I'm a writer, a jewelry maker and a vintage enthusiast.

Mary: Emee, you know I’m so excited for you to be here with me today. You know how much I admire you, and I think it’s so cool that we found out how much we have in common. So I’m really excited to be having this conversation with you today. I always say that we all have this defining moment in our disability journey. Can you tell us about your defining moment in your disability journey?

Emee: Sure. So, I actually had to think about this quite a lot because I've had several. [laughs] So I was born disabled, but due to neglect and just not understanding, I did not start to get treatment for a really long time. But when I was ten years old, I started to regularly collapse and lose consciousness and no one seemed to be really concerned about it, which was a little weird.

But I always had problems with like heart palpitations, chest pain, all sorts of things, and I just kind of lived my life, you know, and kind of just went along with it. And my first diagnosis I officially got when I was 18 years old, right after I graduated from high school. But I think one of the most defining moments in my journey was when I was 27.

I started to have really severe chest pain that would just not go away. And it felt kind of like a rope just being pulled tighter and tighter in my chest and I would feel, like, palpitations and just feel really sick. And I was really struggling to be upright more than I already was, initially. And so one particular week I went to two urgent cares and one emergency room and I said, “You know, I have chest pain, my heart is beating out of control. I'm struggling to stand.” And every single doctor and nurse told me, “You have an anxiety issue, it's just in your head, like just relax, take it easy and it'll go away.” And I was like, “okay,” because I trusted the doctors. And then that Friday, I was watching a baseball game with my boyfriend's mother and I was laying in a recliner, and all I did was, like, sit up from the recliner.

I went from laying to sitting, and my heart felt like it was going to jump out of my chest. And I blacked out. But I was still conscious. I told my boyfriend's mom, “I really don't feel good.” So, she got her husband's oximeter and she put it on me, and my heart rate was like 175. And she was like, “I think we need to go to the hospital.”

And I was like, “okay.” So, we went to the hospital and thank goodness I had a doctor that actually seemed concerned and he was like, “You know, I'm not going to figure out what's wrong with you in the E.R. So I think you need to be admitted, but I'll leave the final decision up to you.” And my boyfriend and his mother were like, “You need to be admitted cause you’ve already been in urgent care and E.R. multiple times this week.”

And so I got admitted to a cardiac ward. And after four days and a complete meltdown, just out of pure frustration, I was diagnosed with POTS and found out that I have actually had POTS since I was ten years old. And most of the things I was doing or had to do as a kid was really actually dangerous for me.

So, it was kind of the moment. And I remember the doctor was like, “I bet a lot of people have told you that you're crazy and that you're making me up. You're not crazy. This is actually a really serious illness.” And that was a moment when I was like, “Okay, like I can't pretend to be able-bodied anymore.”

Mary: I know for myself I've gone through that too, where I was telling my doctor, “I don't feel well. I'm waking up in the middle of the night. I can’t sleep. I get up and I need to go back to sleep an hour after I’ve woken up.” And the doctor said to me, “Oh you’re just getting old,” or “It’s in your head” So we've all been dismissed, especially when it comes to chronic illness.

And we want to make sure we note that POTS is Postural Orthostatic Tachycardia Syndrome. Easier said than spelled. But it affects so many people. And now with long COVID, so many more people are being diagnosed with POTS as well. And while we’re talking about chronic illness, can you talk about some of the misconceptions? You did touch on them already–like some of the misconceptions surrounding chronic illness, but more specifically your chronic illnesses. 

Emee: Sure. So, I could go on for, like, ever about this because there's just so many. But on a broader scale, I think the biggest thing that I see is that people think disability looks one particular way. And if you don't look like that, then you're not disabled. And then the other side of that is, well, if you look super disabled, if you're in a wheelchair, you have a physical difference that's really obvious. Then, well, you can't possibly be intelligent. You're not worthy of life. So, it's like when you're disabled, you have to walk this really thin line between being disabled enough for people to believe you, but not so disabled that people think you're not a human. And that's really, really hard. I think that in my case, I struggle with having to walk that tightrope so often where, you know, I look quite healthy, but I use mobility aids and that confuses people.

I get stared at all the time because people are like, “Oh, why is she using this thing?” I get ugly looks when I park in disabled spots, even though I have my little blue placard, you know, and people are just like, “Why is she parking there? Like, she shouldn't be there.” And I think especially because so many of the illnesses I have cause really severe pain that's invisible.

Even my doctors and medical workers don't believe me when I say I'm in severe pain because I look fine. So again, just like it really feels like you're walking a tightrope at all times and if you sway too far to the left or too far to the right, then your entire distance is discounted. And I think the last part with me and my whole vintage part of my life, being pretty, putting an effort to your work automatically discounts any pain ratio or any disability you may have, even when it comes to the disability evaluations. Like they use how you look and how you dress as a reason to exclude you from getting disability benefits.

And I just think that's ridiculous because how you look has literally nothing to do with your ability, your disability, but people just cannot understand that and it really gets in the way a lot.

Mary: That happens to me too. So, I mentioned in a previous episode that people look at me. They see me as a wheelchair user. They hear my impaired speech. They know I have Cerebral Palsy, but I can’t possibly have a chronic illness. Because you can have a chronic illness or be disabled. But they don’t understand that there’s that intersection. You have both, and I have both. And I think that's why I went undiagnosed for so many years is because doctors assume. And doctors have said to me before, “Oh, it’s your Cerebral Palsy.” And I’m like, “Okay but you’re saying that because you don't know. You don't have an answer, so you're like, “Well, you already have this, so why don't we blame the unknown on what we know?” And it’s super, super frustrating. And what you were saying about being dressed well enough. It’s like: you have to go to the doctor, especially myself as a wheelchair user; I know I have to look good for doctors to treat me with any respect. But when I look too good, they think nothing’s wrong with me or I can't be in pain because I don't look sick. So even though I’m a wheelchair user, doctors still have that implicit bias of, “Oh, you’re just sitting down, but you look fine “

Emee: Yeah, I totally agree. And I think it's, like, not only frustrating for us to have to live with that, but it's actually dangerous because people look at a disabled person who's, like, wearing makeup and, like, a big dress and whatever, and they discount what they’re going through. And they could have, like, a life-threatening condition that needs immediate care and they get sent home.

Like, there are studies, especially with women, that say, like, a good number of women during active cardiac arrest get sent home and told it's anxiety. And it's because they don't look like they're in pain or they are just a girl. And we all know that being female alone has a huge impact on how you're treated. And like, yeah, it's not just a frustrating thing.

It's a life-threatening thing. And like you said, I have the same thing where I love dressing up because it makes me feel good. But when I go to the doctor, I'm like, “Don't dress up too much, don't wear makeup, don't do this, don't do that.” Because I know it will affect how they treat me. And I shouldn't have to worry about what I'm going to wear to the doctor when I'm already worried about like, my care and all the medications and all the things I have to remember to ask them about and all this stuff.

Like, it's such an extra burden that we don't need because we already have to carry so much. And then we have all of that as well. And I don't think I know a single disabled person who has not experienced that.

Mary:  I think we just touched on this. But how has ableism (medically or whatever aspect of ableism).. how has it affected your disability journey?

Emee: There's like a million answers to this question, unfortunately. But for me, a few of the biggest things is, number one, I was born disabled, like I said, and so I started to show symptoms of serious conditions, really young age. But because I was so young, they really believed that young people couldn't be so sick. And so, I was told that it was depression or anxiety or it was trauma based or everything but like an actual physical diagnosis.

And so, I went 18 years before I had one diagnosis. I had POTS starting when I was ten, but wasn't diagnosed until I was 27 years old. So, I went 17 years with a really serious illness, not knowing I had it just constantly collapsing and having [unclear] episodes and no one thought anything of it or thought that it was abnormal that a 12, 13-year-old girl was constantly collapsing and like blacking out. So, I think that ageism part of it is huge and it's still a problem now.

And then as I got older, like we said before, how I look has been a big part of it and also being female has been a massive part of it because every time I get denied treatment by a doctor, or I get gaslit by a doctor, I just wonder if they would treat a white male patient the same way I'm treated.

And that also hurts a lot. I remember so clearly one instance of me going to my neurologist and struggling to stay upright a lot because since I was not diagnosed for so long, my mobility has worsened. And I was like, “I would like to use a cane or a mobility aid because I'm really starting to struggle with my balance and it's always been a problem, but it’s getting worse.”

And he literally laughed in my face and said it was ridiculous for me to even consider using a cane. And I was so shattered by that. Now, five years later, I look back on it and I'm like, “Why did I think I needed his permission? Because I didn’t.” [laughs] But, initially I thought, like, I needed his permission. And if he said no, then I couldn't have one.

And the biggest ironic piece of this is after we walked out of his office to the nurse's area where I was supposed to make a new appointment, I fell and landed on top of my doctor. Then he picked me up and he was like, “Well, that was embarrassing for you.” And then just walked away. [laughs] And I was like, “I literally just, like, fell over and landed on you.

And yeah, it was embarrassing. And I was like, “I wonder if that could have been avoided if I had had a mobility aid.” So again, the ableism within the general population is one thing, but I think I never get used to the ableism in the medical community with my doctors, nurses. And I have had some really amazing doctors and nurses who have saved my life and I love them.

But there's also a lot who are just victims to ableism, victims to ageism, victims to misogyny, and they cannot crack out of that. And again, it is actually life threatening to not get the care I need because I'm female, because I'm young, because of how I look. It's really problematic. And I really hope that with the new age of medical workers that this changes because it's dangerous.

Mary:  You and I have a lot more in common than I even could imagine. I know I have POTS. I don’t have an official diagnosis. I almost passed out twice, like, completely almost blacked out. And my doctor was like, “Oh, it’s your blood pressure bottoming out.” Well, that’s because they put me on blood pressure medication, and when you have POTS that can be very dangerous to be on blood pressure medication. Because it does bottom out your blood pressure and you can pass out. So, I don’t have an official diagnosis because when I talked to my cardiologist, the nurse told me I couldn’t have POTS because I’m in a wheelchair and it only affects people who stand up. And as you and I know, it’s any change of position. And I want to make a note that I am an ambulatory wheelchair user, so I do get up to do things. I walk with a mobility aid, but I don’t walk that much. But when I am changing position and standing up to get in my wheelchair, or sitting up from my bed. So can you imagine someone just looking at you and saying, “You can’t possibly have that condition because you’re already disabled?” Which is what she’s telling me.

Emee: Yeah. I actually had a very similar experience, not with POTS. But when I was 18, the first thing I was ever diagnosed with was celiac disease. And this is what I think is very interesting is that when I got diagnosed with celiac disease, I was diagnosed and then it was taken back because they didn't diagnose me appropriately. And then they said that it was just anxiety, depression, being a difficult teenage girl.

And I went to all those different doctors and they said, “Well, you can't have celiac disease because you're a girl. You can't have celiac disease because you're six feet tall. You can't have celiac disease because of this or because of that.” And they listed all these reasons why it was absolutely impossible for me to have celiac disease, which is, again, another fairly dangerous condition when not treated. And now fast forward almost 15 years later, celiac disease has gone from, “Oh, it's an incredibly rare disease that we know nothing about” to like when I call my GI doctor and I'm on hold the like pleasant robot lady is like, “Celiac disease runs in families. One in 22 people have it. You should get checked if you have a family with celiac disease.”

And it's like common knowledge. And so, I just think it’s really interesting where like so many other things that I'm diagnosed with, it's rare we don't have good treatment for it. We don't know what to do with it. We don't know where it comes from. It might be genetic, blah, blah, blah, whatever. But then as I get older, it goes from, “Oh, it's super rare” to like “Literally everyone and your mom has this.” [laughs] Like we know exactly what to do because it's so common.

And I think like the frustration of being told it's impossible for me to have a thing I have. And like going through all that suffering is definitely traumatic, but there's a little glimmer of hope where I'm like, “Okay, if that happens with this disease, maybe it will happen with POTS, maybe it will happen with fibromyalgia, maybe it will happen with all these other illnesses.” Where as time goes on, it will go from exceedingly rare to common sense.

And so, in a weird way, I'm like, okay, if my trauma and the things I survived makes the future better for disabled people who are coming now, I like to think maybe the suffering is a little bit worth it, but I might just be a little too hopeful. [laughs]

Mary:  No, I think we actually like hold onto that because we've all been through so much in terms of diagnoses. I had a rheumatologist tell me I had hypermobile Ehlers-Danlos Syndrome in one visit, and in the next visit, when I asked him about an official diagnosis, he said “No, we aren’t going to do the testing because it’s too expensive, so...”

Emee: Yeah, I've also heard that a lot, especially when you don't have great insurance. But even at this point when you do have good insurance. It's interesting because it seems like they don't necessarily want to help you so much that you're better because then you don't come in as often, but they're also not going to spend the money to test you to prove that you have something that needs treatment. So, it's kind of like a double-edged sword and it seems to be getting a little bit worse, at least in my personal experience. And that again is very scary for me because I don't think money should dictate someone's care whether you save their life or not. But in America, especially where we live, unfortunately, money kind of dictates everything so we don't really have a choice.

But I do find it disturbing when they're like, “Oh, we are not going to do this test because it's expensive.” And I've been told too even when I needed like a C.T. scan, they were like, “Well, you don't want to submit it to your insurance. You can pay for it yourself if you want, if you have a spare $3,000. But otherwise we're not going to run it.” And I was like, “OK,” so I could just hope that there's not something seriously wrong with my brain when I already have a [unsure] in my spinal cord, or like pay $3,000 and then maybe find out there is nothing wrong. And then all that money’s gone, not that I have that laying around to begin with.

So, it's all a little messed up, which is not very eloquent way to put it. But, you know, that's just the truth. [laughs] But again, I do have hope with a new generation of doctors, nurses, medical workers coming in that I'm hoping they learn from the mistakes of the last generation and they become better at treating people like us, especially people who have complex illnesses or rare diseases.

Because it's important and we deserve treatment as much as anyone else does.

Mary: We absolutely do.

Mary: We’re all out of time for this episode. I know, I know. Just when things were getting good, too. That just means you’ll have to come back for part two.

[music playing while Mary speaks] Thank you for joining me for this episode of the Politics of Disability Podcast. As you navigate your journey, remember: disability is political; disability is messy; disability is not palatable--nor does it have to be.

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