Disability: The History I Didn't Know I Had

[Content Note: Ableism, Gun Violence, Depression, Suicide and Suicide Ideation, Medical Malpractice]

Last year I decided to take advantage of the HIPAA access rules to gather up for my private records every shred of medical documentation there is out there as pertains to me. That meant writing letters to well over a dozen doctors across multiple states, including a letter to my "primary care physician" who has been our family doctor for the better part of my entire life. I had grandiose dreams of distilling decades of complex medical history into a couple of informative and approachable charts to be handed to any new doctor I might have to see from here on out.

What I did not expect was to find that I have a documented history of severe mental illness, as diagnosed by my primary care physician, without ever telling me.

My family physician is an MD. I don't know that he has any background in recognizing and treating mental illness. I don't know that he's had any formal training since his original doctoral work was finished a little more than two years after I was born. I do know for a fact that he never administered any sort of test to determine if I was mentally ill, and instead based his diagnosis on observations of my behavior in his office. And then he wrote those diagnoses on his charts -- my Official Medical Records -- without ever telling me what he was writing down.

And that is how I have an established long-term medical history, stretching back into my early teens, of severe clinical depression. And the way my doctor discovered that is because I -- and I hope you've braced yourself for this -- used to sometimes cry in his office during doctor visits.

That part I absolutely remember. No one ever asked me why I was crying mid-visit, and I doubt I would have been able to tell them so because I lacked the vocabulary necessary to do so, but I was crying because I was being gaslighted by the entire medical profession. When the surgery which was supposed to fix my barely-out-of-my-preteens scoliosis didn't help to alleviate my pain, I was informed with systematic brutality by every specialist and doctor I went to that I was making it all up, that I wasn't really in pain, that I was inventing symptoms because I craved attention and sympathy.

Most of them wouldn't even bother to look at the x-rays of my back that I dutifully lugged to each appointment. Many of them prescribed me powerful medications with strong side-effects without warning me what to expect, because they insisted that someone prone to inventing back pain would also be prone to inventing side-effect symptoms.

Some of the medications caused me to lose consciousness and faint in public. (And crumpling uncontrollably to the ground is not good for someone with a twisted spine.) One of the medications prevented me from sleeping more than 30 minutes a night for two straight weeks. One medication caused me to hear an internal voice telling me to kill myself; I went to my mother, crying, because -- as I told her -- I didn't want to kill myself, but the voice said I had to. Alarmed, she took me off the medication immediately, and the incident never repeated itself.

Later we found out that a healthy teenager in a trial use of the drug had unexpectedly committed suicide.

That was also when we found out that at least some of the "pain pills" being prescribed for me were actually anti-depressants. Which seemed odd to us at the time, but we didn't realize that my Official Medical Records had "depression" scrawled all over them. Instead, we stopped going to doctors for awhile, and I learned to live with the constant pain.

I tell you all that to then tell you this. On December 14, 2012, Adam Lanza shot 27 people, including his mother and a number of children and staff members at an elementary school. This horrific incident is just one in a pattern of shootings in America, leading some to project that American gun deaths will exceed traffic fatalities by 2015. In response to this incident in particular and this pattern in general, the NRA (the National Rifle Association) which has historically fought tooth-and-nail against the idea of a national gun registry list on the grounds that gun owners might then be discriminated against, has suggested that instead we maintain a nationally registry of all mentally ill persons.

This reprehensible idea is riddled with problems, many of which have been more aptly laid out by Melissa McEwan, but leaving aside all of the following...

1. Not all mentally ill people are violent.
2. Not all violent people are mentally ill.
3. Not all mental illnesses can be easily or accurately diagnosed.
4. Not all mental illnesses tend toward the same symptoms.
5. Stigmatizing mental illness makes it harder to receive treatment.
6. Stigmatizing mental illness means further victimizing victims of gun violence whose mental illness was caused by gun violence.

...leaving aside all that... well, you can't, can you? You can't leave aside all that because that is some seriously fucked up shit is what that is. A national database of mentally ill persons is a FUCKING BAD IDEA. If you looked up FUCKING BAD IDEA in the Oxford English Dictionary, I'm pretty sure you'd see: "example: the idea that a national database of mentally ill persons would somehow magically cause fewer gun deaths and be less of an intrusion on basic human rights than if we were to, say, limit the sorts of weapons freely sold to the American public or maintain a national registry of guns, both of which the NRA fiercely opposes."

But assuming you could leave aside all that, let's talk about the fact that you -- yes, YOU, personally -- could have a mental illness in your Official Medical Records and not even know it. Because if your doctor writes it down, no matter how much of an asshole he may be and no matter how unqualified he is to make such a judgment, it becomes part of your medical history. There's not a simple easily-navigable system in place to effectively challenge a document in your medical files, or to demand that a diagnosis be stricken from the records. There's no way to appeal to an external medical board and have the ink removed from the page. If you don't like what your medical doctor writes in your file, your job as a red-blooded freedom-breathing eagle-petting American is to FIRE YOUR DOCTOR and get another one, after maybe sticking a letter of disagreement in your case file that probably no one will ever take seriously except to mark you as a Trouble-Maker.

And you can do that, certainly. But it still doesn't erase what that doctor wrote down about you.

Proponents of a national database of mental illnesses would probably read the above and scoff at my obvious over-reaction to their great idea. Of course they wouldn't just take Joe Blow MD's word for it before adding someone into the database; of course there would be A Process to make sure that people were only added if they needed to be added, and of course there would be An Appeals process to prove that you weren't then -- or at least weren't now -- a danger to others. There would be ways to get off the database. Everything would be fair and awesome and above-board.

Except... that's not how reality works. My doctor didn't misdiagnose me because he's stupid or evil. He misdiagnosed me because we live and work and breathe a culture where people with illnesses are considered weak and stupid and evil and bad. People with illnesses are stigmatized for being ill. I didn't "shape up" after the surgery that was considered the best possible treatment at the time, and therefore I was being willful and stubborn and difficult. I couldn't be actually in pain because that would mean the doctors were wrong and that was unthinkable. Better to write down that I was making up my pain due to my obvious narcissistic tendencies.

And when I cried because no one believed me or cared one whit about my hurt, well, that just showed that I was severely depressed. Better to load up the little girl on powerful anti-depressants and tell her that they will help with her pain. It'll be like a placebo effect, only better.

My story isn't weird or unusual or uncommon. It's not the stuff of a Charles Dickens novel. This sort of thing happens all the time. The internet is full of patients with chronic pain conditions who have to fight tooth-and-nail to be taken seriously by their medical professionals, who have to constantly and proactively resist being labeled "crazy" or depressed or mentally ill. And if these same patients understandably develop actual depression or anxiety in the face of systematic medical malpractice, then that mental illness which was derived from medical malpractice is used to excuse the medical malpractice. "See? We always knew she was depressed," they'll say.

A national database of mentally ill persons is a terrible idea for a lot of reasons. But it's also a terrible idea because it presupposes that doctors are always accurate, always honest, and always act in a patient's best interests. I'm sure there are doctors like that out there, somewhere.

But I've never been treated by a single one, despite having visited dozens of doctors in my lifetime.