The History I Didn’t Know I Had

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

~ by Ana Mardoll

This 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.

9 thoughts on “The History I Didn’t Know I Had

  1. Silver Adept December 26, 2012 at 10:51 am

    “First, do no harm” certainly seems to have been thrown out the window. I don’t understand how you could have been diagnosed with something, and yet nothing was done to try and alleviate the supposed problem. It goes against everything we’re taught (and see on television) about doctors.

    And yet it is. Heaven help us if a doctor makes a mistake about us. Wish there were something more to do than observe the jaw-dropping WTF at work here.

  2. storiteller December 26, 2012 at 11:07 am

    I’m so sorry you had to go through that. It’s bad enough to be in debilitating pain, it’s then bad enough for doctors to tell you that “you shouldn’t be,” but then for those doctors to inaccurately misdiagnose and lie to you about medications you were receiving – that’s horrifying.

  3. Firedrake December 26, 2012 at 11:34 am

    I think that part of the problem is that doctors, particular the sort of relatively old and successful doctor who gets into medical policy-making, have a strong and ancient bias against being checked up on. If Doctor A said something, the presumption should always be that it was the right thing, because he was (a) on the spot and (b) a doctor, and nobody else has both those characteristics.

    Some time I am going to have to write a book on how to get the stuff you need out of doctors. I fear it may be culturally biased, much more applicable to the UK than to the USA, but I think it might still be valuable – it’s little ways of expressing things, phrases to use and phrases to avoid, that most non-doctors don’t know and which are hard to remember for someone who’s ill or otherwise distracted.

  4. anamardoll December 26, 2012 at 2:10 pm

    I don’t understand how you could have been diagnosed with something, and yet nothing was done to try and alleviate the supposed problem.

    Well, I imagine they thought they were doing something with the anti-depressants. I just wasn’t told what they were since obviously they’d work BETTER if I wasn’t being willful and insisting that the anti-depressants weren’t working. (Clearly I was a risk for such behavior since I was “willfully” insisting that the back surgery hadn’t worked, either.)

    CN: rape, homelessness

    Even in the 2000s, when we consider psychological medicine to be, well, more advanced, I sought a doctor specifically for depression. I had been referred there because my primary doctor gave me a test with things like “have you lost a lot of weight lately” on it and I scored high on the depression-o-meter. The psychiatrist gave me anti-depressants, but never once talked to me to find out that the reason I was depressed was because I was having to decide whether to move in with my rapist or live on the streets. Which, you know, is the sort of thing that can be depressing. Instead he just gave me pills and saw me every 3 months or so to see if my dosage needed adjusting. *facepalm*

    So, long story short, the way we treat depression (whether it’s correctly diagnosed or not) in this country is messed up. The fact that I was incorrectly diagnosed and dosed as a young teenager is really just so much icing on the awful cake.

  5. Amaryllis December 26, 2012 at 3:58 pm

    Actually, antidepressants are well known to be useful in the treatment of chronic pain. It is entirely standard practice to try antidepressants before giving out addictive narcotics, and I say this as someone who cannot tolerate antidepressants and takes narcotics.

  6. anamardoll December 26, 2012 at 4:30 pm

    @ Amaryllis, please note that this is not a story about a patient who made an informed decision in consultation with her doctor to try anti-depressants in the hope of receiving pain treatment as a side-effect. This is about a doctor diagnosing a patient with depression without informing her (or her guardians), and about other doctors giving her extremely powerful (and in some cases dangerous) anti-depressants without informing her of the fact.

    There is a difference between the OP situation and what you bring up, and that difference is informed consent. With that in mind, please stay on that topic. Thank you.

  7. Silver Adept December 26, 2012 at 7:22 pm

    @Ana –

    So, long story short, the way we treat depression (whether it’s correctly diagnosed or not) in this country is messed up.

    Amen to that. Especially if someone will prescribe medicines without actually talking to the person first.

    Well, I imagine they thought they were doing something with the anti-depressants. I just wasn’t told what they were since obviously they’d work BETTER if I wasn’t being willful and insisting that the anti-depressants weren’t working. (Clearly I was a risk for such behavior since I was “willfully” insisting that the back surgery hadn’t worked, either.)

    Ah, the mysterious Anti-Placebo Effect, where medicines are less effective if the person taking them is informed about what they do? Oy.

    Certainly sounds like a two-finger salute is in order for the doctor that messed up your file in this way.

  8. froborr December 27, 2012 at 2:20 pm

    I really want to comment on this post, but I’m not sure what to say that’s remotely on topic.

    I’ve been involved, in one way or another, with the mental health profession my whole life. My whole family has. (Always from the patient end, to be clear.)

    Neither I nor any of my loved ones has ever had a particularly bad experience. I hear horror stories all the time from other people, but I’ve never experienced anything like that.

    That terrifies me, because it’s equally obvious that (a) the people who’ve had bad experiences are not making them up and (b) they haven’t done anything to cause those bad experiences.

    Which means it’s a matter of pure luck that I’ve had nothing like this happen to me, and that’s really frightening, because the thing about depending on luck is that it always runs out eventually.

    As for the identity of a national registry of the mentally ill, I’ve seen a few people of my acquaintance making similar arguments, and it fills me with so much rage I can’t even coherently respond. Most violent people are not mentally ill, but people are determined not to understand that. I think it’s because that’s the most horrific thing about violence; most of it is perpetrated by people just like us, when we desperately want to be able to cleanly divide the world into normal people and monsters.

  9. Catherine December 28, 2012 at 7:44 am

    That is truly horrifying. As is the idea of a mental illness registry, but I admit, I’m currently pretty much stuck on the ‘this really shouldn’t happen to you or anyone’ side of things.

    Much love

    Catherine

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