Blogging Against Disablism Day: Do Not Deny Me

Trigger Warning: This post contains a very personal account of my experience with doctors and ableism which could be triggering. It also discusses gas-lighting and experiences similar to it.

Blogging Against Disablism Day, May 1st 2015

Image Description: The above image is a banner for Blogging Against Disablism Day, a 5×4 grid of pictures, in various colors, of the type used to represent people on signs. One has a cane, and one has a wheelchair. The image links to the Blogging Against Disablism Day page.

Recently, I was contacted about Blogging Against Disablism Day. I knew right away that I wanted to participate, but what to write about? Certainly I’ve had personal experiences with disablism, or ableism as it is sometimes called. But what specific type of ableism did I want to talk about? There are so many different ways that ableism presents, the institutionalized and the interpersonal, against the physical, the mental, and the developmental, the visible and the invisible. There is internalized ableism and external ableism. There is fear, pity, disbelief, simple hatred—but what should I talk about? What have my strongest, most memorable experiences been with?

The answer came fairly quickly. Doctors. After all, my experiences with doctors actually seem to have caused some of my disabilities—certainly exacerbated them. Most of my experiences with ableism have been with doctors. For three years, most of my experiences period were with doctors. Once I finished writing this, I realized it wasn’t just doctors, but denial. Denial of my experiences, my voice, my agency.

This is something I’ve written about many times–if you used to follow me on tumblr you probably saw at least a few of my rants. Still, though, it’s hard to talk about. How do I even start? How can I begin to explain why every time I see a doctor my blood pressure shoots up so high they occasionally have to check it a second time? (I know it rises, you see, because the one FNP I actually trust takes my blood pressure afterwards, and it’s fine).

When I was eleven, I got sick. I was ill for months, until finally I ended up in the hospital for dehydration. After that I was too sick to go to school. I finished the year with a tutor, and the next year I was homeschooled.

The experience was terrible. I hardly left my house or saw anyone my age. I was ill constantly. Sometimes it was so bad I honestly thought I would die.

My parents took me to doctors, of course.  So many doctors. None of them knew what was wrong. Some didn’t even bother to see me. Most of them came, eventually, to the same conclusion:

It was all in my head.

They weren’t the first to suggest it. They weren’t the last, either—the experience would be repeated when I was 13. Most of them figured it was stress, or I was faking to get out of school. Whether they thought it was conscious or not I don’t really know. I know the impression I got then: that I was in pain, and no one believed me, and that anyone who did believe me couldn’t help anyway.

Eventually they did figure it out. Abdominal migraine was suggested, and didn’t seem unlikely—I had regular migraines, after all—but the eventual diagnosis was GERD. They treated it, and it got better, though I still suffered symptoms.

I went back to school when I was 13. I was still sick, and I missed about as many days as before, but I kept going until November. In November I had my Bat Mitzvah. Afterwards, it was like something in me collapsed. Like I’d been holding something off, barely, and couldn’t manage it anymore. The day after my Bat Mitzvah I slept late. When I woke up I think I must have had a migraine. Unsurprising, given their frequency and the previous night’s party.

I waited for it to go away, like I always did—I knew by then that nothing made my migraines go away once they’d begun, nothing but time and darkness.

But the migraine didn’t go away. Not that day, or the next. Not for months.

For six months, I was in pain. I don’t really remember it. That is, I remember what happened, and moments of emotion—fear, hopelessness, helplessness—but I don’t remember the pain. I can’t imagine, thinking back, how I lived. I still get migraines, and when I do I wonder how I ever could have lived through six months of that pain being constant.

So there were more doctors—so many more doctors. And more people telling me I wasn’t in pain, or the pain was an excuse not to go to school. I learned to smile and say I was fine to hide how much I hurt, from other, and from myself. That made things worse: I remember a neurologist who said I didn’t look like I was in pain, and clearly decided I couldn’t be. The more times they failed to make me better, the more convinced they were that there was nothing wrong in the first place, or that if something was wrong, it was simply that I didn’t want to go to school—though I told them again and again that I had always loved school.

Eventually I did find one doctor who could help me. He was a specialist in migraines, and had chosen to specialize in them  because of the very trouble I’d been having—he’d met so many neurologists who complained about migraine patients, dismissing them as over sensitive, or liars, or else psychosomatic. (It should be noted that there is nothing shameful about having psychosomatic pain, but I get the impression that not all doctors feel the same.) This doctor got me on medication and a very restricted diet, and the pain went away almost immediately, as if by magic. The migraines still come occasionally, because not all migraine triggers can be controlled and the ones that can I occasionally misjudge, but they never last more than a day.

I wish I could say that was the end of my problems with doctors. I haven’t had many more, at least—my primary physician knows me well, and is careful about who he sends me to. He knows the stress that seeing a doctor can cause me. Bad experiences are still common enough to keep my fear and anxiety alive—it almost seems that any time I start to get past my trauma, something happens to stop me. There was the psychiatrist who, in our first meeting, revealed things to my mother that he knew were meant to be confidential—then blamed me for wanting to have her with me when meeting a new doctor. There were psychologists and psychiatrists who dismissed any symptoms of psychosis based solely on the fact that I was, at the time, able to describe them as though they were symptoms. There was the wisdom teeth removal that I woke up in the middle of—not preventable, perhaps, although I did voice concern about it, only to have my concerns dismissed out of hand.

And, of course, there are the doctors who refuse to speak to me—instead unfailingly addressing my mother, even when they are told that I am the patient, and I am the one they should address.

There was one diagnosis with which I was very fortunate. I remember the moment when I figured out I had fibromyalgia—it was before I was diagnosed. I often do research—curiosity, distrust of doctors, and the need to know what sensations might be worth reporting make research a necessity. In order to be an advocate in my own care, I have to know what I’m advocating.

Everything I found pointed to me having fibromyalgia: reading the list of common comorbid conditions was like looking at my medical history. I knew I couldn’t really be certain, but suddenly I felt sure. And I began to cry. Not out of grief or pain—the pain I was used to, and the grief came later. I began to cry because my research told me, also, that fibromyalgia could take months to diagnose, and that some doctors didn’t even believe in it.

And so I cried, because I couldn’t do that again. I couldn’t.

But I was lucky. My doctor did believe in it, and as soon as he had ruled out everything he could—lyme, for instance—he did the test for fibro. He pressed places on my body, and it hurt, and he believed me, and it was official. I had fibromyalgia.

When I list them out like this, all the things that happened to me, it seems sort of silly. It doesn’t sound like something that could cause all the pain it has. But it is. After three years of being told I wasn’t really feeling the things I was feeling, I had nightmares. The same sort of nightmare over and over, that I was losing my mind and losing time. Whenever I was in a doctor’s office or hospital I would get anxious, terrified even. My mind would fill with pictures, things that never happened standing in for the fear of things that did. I would see myself on an operating table, people in masks operating on me while I was wide awake, but unable to stop them. And then of course that actually happened when my wisdom teeth were removed, like a nightmare coming true. I was pretty  much catatonic for several minutes afterward, and afraid to be left alone for the next several days. I’m still learning, or relearning maybe, all the things I need to tell doctors. That I shouldn’t dismiss the pains I feel, even when they aren’t completely disabling. I tried my best to avoid seeing them when I was in high school, and probably ended up a lot sicker than I would have otherwise. Even now, six years after my migraines were finally treated, I can still hear the things the doctors said. My mind supplies them—helpfully updated to fit current circumstances—every time I have a good day. Or a really bad one, for that matter.

And despite all the people who seem to think doctors are infallible, there are people who think I should see more, because they disagree with my doctor. Neither of these perspectives are particularly welcome. So I suppose, then, that I have this to say:

Doctors, listen to your patients, even if they are children. Even if you can’t imagine feeling what they feel. Even if, for whatever reason, they don’t fit your criteria for independent adulthood, or sanity, or trustworthiness, or whatever might make you want to dismiss their complaints and concerns out of hand.

And for everyone, I have this to say: Doctors aren’t infallible. That’s not a criticism of medical science, which like all sciences has a long way to go, but which has done a great deal of good. It’s not even really a criticism of doctors. Good doctors realize they aren’t infallible, and they listen to their patients. But not all doctors are good. I learned a few years ago that there’s a word for what happened to me—or at least, a word for something like it, done intentionally by abusers. When someone tells you that you aren’t in pain, and you are, that you are doing things you aren’t and not doing things you are, it’s called gaslighting. I don’t think my doctors were trying to cause psychosis, but they did. I suppose technically some of them were trying to make me doubt my sanity, the way they did.

I’m not the only one who’s experienced that, from doctors or anyone else. It’s a common form of ableism. Add to that all the people who deny that medical abuse and ableism in medicine even exist—that’s a lot of people denying the realities that disabled people live with every day. So don’t add to that. Don’t deny the experiences of the disabled people you know—and I don’t just mean if you aren’t disabled yourself. It’s just as possible to deny a disabled person’s experiences if you, too, are disabled, especially if it’s a different kind of disability. How many times have I heard people saying “you wouldn’t tell someone with (x physical disability) to ‘get over it’, so don’t tell someone with depression”? Hell, I’ve probably said that, and I know from personal experience it isn’t true.

Understand, also, that you do not know another’s experiences. I know what has happened to me, and the effect it has had, and based on that I make decisions on my treatment. But these are my decisions to make, and no one else’s, and when I want advice on them I will ask.

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6 thoughts on “Blogging Against Disablism Day: Do Not Deny Me

  1. This is so well written & I totally understand and have felt all of what you’ve described when visiting numerous doctors. I absolutely dread going to see medical professionals because I’m always made to feel like I’m crazy and not taken seriously just because they can’t figure out what’s wrong. I sincerely hope that doctors learn to have more respect for their patients and listen to them and not make quick assumptions just because something can’t be explained. I hope you’re doing well and never have to go through of any of what you’ve gone through again.

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      1. I’m glad you posted it. I would like to get to the point where I work up the nerve to write about personal things as well and I’m glad to see more people sharing their stories and bringing awareness.

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  2. Thank you for contributing to Blogging Against Disablism Day!

    I’m so sorry you went through all this. It is a form of abuse and it’s no surprise that it would haunt you. Mr Goldfish had similar experiences as a child – he saw one doctor who literally laughed at his pain during an examination – and has taken a long time to build up a trusting relationship with his GP, even in his thirties.

    I hope you’ve seen the last of this sort of treatment and that you continue to heal from it.

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    1. Thank you for your comment.

      This post was very hard to write and even harder to post, but I’m glad I did. It’s so helpful to be reminded that others have had experiences similar to mine. Sharing my experiences can be very therapeutic and hopefully it helps others also.

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  3. God, I’m sorry you went through all this, it sounds horrible. I’ve been mostly lucky with my interactions with doctors, even though I have fibro, but I’ve heard a lot of stories like yours. Sometimes I wish these doctors could experience our pain just for a few days.

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