Self-Diagnosis and Its Discontents

There’s a certain scorn reserved for people who diagnose themselves with mental illnesses–people who, based on their own research or prior knowledge, decide that there’s a decent chance they have a diagnosable disorder, even if they haven’t (yet) seen a professional about it.

I understand why psychologists and psychiatrists might find them troublesome. Nobody likes the idea of someone getting worked up over the possibility that they have a mental illness when they really don’t. Professional mental healthcare workers feel that they know more about mental illness than the general population (and, with some exceptions, they do) and that it’s their “job” to serve as gatekeepers of mental healthcare. This includes deciding who is mentally ill and who is not.

Self-diagnosis also gets a bad rap from people who have been professionally diagnosed with a mental illness. They feel that people who self-diagnose are doing it for attention or because they think that diagnosis is trendy.

This actually bothers me much more than the arguments against self-diagnosis coming from professionals. Why?

Because the claim that people who self-diagnose are just “doing it for attention” or because they think it’s “cool” is the exact same claim frequently made about people who get diagnosed professionally.

To be clear, I’m not saying that people never label themselves as mentally ill for attention. Maybe some do. Maybe a significant proportion of people who self-diagnose don’t really have a mental illness at all. I’d have to see research to know, and from my searches so far I haven’t really found much research on the phenomenon of self-diagnosis. (But I’m taking note of this for my master’s thesis someday.)

However, there’s a difference between someone who’s feeling sad for a few days and refer to themselves as “depressed,” and someone who’s been struggling for weeks, months, or years, and who has read books and articles on the subject and studied the DSM definition of the illness. The former may not even count as “self-diagnosis,” but rather as using a clinical term colloquially–just like everyone who says “oh god this is so OCD of me” or “she’s totally schizo.” (This, by the way, is wrong; please don’t do it.)

(It’s also likely the case that some people self-diagnose because they have hypochondria. However, the problem is not that they are self-diagnosing. The problem is that they have untreated hypochondria. Maybe diagnosing themselves with something else will get them into treatment, where a perceptive psychologist will diagnose them with hypochondria and treat them for it.)

Even if some people who self-diagnose are wrong, I still think that we should refrain from judging people who self-diagnose and take their claims seriously. Here’s why.

1. It gets people into treatment.

I wish we had a system of mental healthcare–and a system of social norms–in which everyone got mental health checkups just as they get physical health checkups. For that, two main things would have to change–mental healthcare would have to become affordable and accessible for everyone, and the stigma of seeing mental health professionals (whether or not one has a mental illness) would have to disappear. (There are other necessary conditions for that, too–the distrust that many marginalized people understandably have for mental healthcare would have to be alleviated, and so on.)

For now, going to see a therapist or psychiatrist is difficult. It requires financial resources, lots of time and determination, and a certain amount of risk–what if your employer finds out? What if your friends and family find out (unless they know and support you)? What will people think?

Because the barriers to seeing a professional are often high, many people need a strong push to go see one. Having a strong suspicion that you have a diagnosable mental illness can provide that push for many people, because nobody wants to go through the hassle of finding a therapist that their insurance covers (or finding a sliding-scale one if they don’t have insurance), coming up with the money to pay the deductible, taking time off work to go to the appointment, dealing with the fear of talking to a total stranger about their feelings, and actually going through with the appointment, only to be told that there’s “nothing wrong” with them.

As much as I wish things were different, the reality right now is that relatively few people go to therapists or psychiatrists unless they believe that they have a mental illness. If self-diagnosing first gets them into treatment, then I don’t want to stigmatize self-diagnosis.

2. It helps them find resources whether or not they see a professional.

In the previous point, I explained that for many people, self-diagnosing can be a necessary first step to getting treatment from a professional. In addition, once people have diagnosed themselves, they are able to seek out their own resources–books, support groups, online forums, etc.–to help them manage their symptoms. This can be extremely helpful whether or not they’re planning on getting treatment professionally.

While psychiatric labels like “depression,” “generalized anxiety,” and “ADHD” have their drawbacks, they are often necessary for finding resources that help people understand what they’re going through and help themselves feel better. If I’m at a library looking for books that might help me, asking the librarian for “books about depression” or “books about ADHD” will be much more useful than asking them for “books about feeling like shit all the time and not wanting to do anything with friends” or “books about getting distracted whenever you start work and not really having the motivation to finish any of it and it has nothing to do with laziness by the way.” Same goes for a Google search.

It’s certainly fair to be worried that people looking on their own will find resources that are unhelpful or even dangerous. But I think this is less of a problem with self-diagnosis per se, and more of a problem with the lack of scientific literacy in our society, and the lack of emphasis on skepticism when evaluating therapeutic claims. For what it’s worth, going to see a mental health professional will not necessarily prevent you from encountering quackery and bullshit of all kinds. And in any case, the blame does not lie with the people who self-diagnose and then fall for pseudoscientific scams, but with the people who perpetrate the scams in the first place.

This point is especially important given that many people will not be able to access professional mental healthcare services for various reasons. Maybe they can’t afford it; maybe they work three jobs and don’t have time; maybe they can’t find a therapist who is willing to accept the fact that they are trans*, kinky, poly, etc. Maybe they are minors whose parents are unwilling to get them into treatment. Maybe they were abused by medical professionals and cannot go back into treatment without worsening their mental health.

There are all kinds of reasons people may be unable to go and get their diagnosis verified by a professional, and most of these are tied up in issues of privilege. If you have never had to worry that a doctor or psychologist will be prejudiced against you, then you have privilege.

3. It can help with symptom management whether you have the “real” disorder or not.

At one point when my depression was particularly bad I noticed that I had some symptoms that were very typical of borderline personality disorder. For instance, I had a huge fear that people would abandon me and I would bounce back and forth between glorifying and demonizing certain people. If someone made the slightest criticism of me or wasn’t available enough for me, I would decide that they hate me and don’t care if I live or die. I had wild mood swings. That sort of thing. It’s not that I thought I actually had BPD; rather, I noticed that I had some of its symptoms and wondered if perhaps certain techniques that help people with BPD might also help me.

Luckily, at this time I was still seeing a therapist. So in my next session, I decided to mention this observation that I had made, and the conversation went like this:

Me: I’ve noticed that I have some BPD-like symptoms.
Her: Oh, you don’t have BPD.
Me: Right, but I seem to have some of its symptoms–
Her: No, trust me, I’ve worked with people with BPD and you do NOT have BPD.

I suppose I could’ve persevered with this line of thinking, but instead I felt shut down and put in my place. I dropped the subject.

So determined was this therapist to make sure that I know which mental illness(es) I do and do not have that she missed out on what could’ve been a really useful discussion. What she could’ve done instead was ask, “What makes you say that?” and allow me to discuss the symptoms I’d noticed, whether or not they are indicative of BPD or anything else other than I am having severe problems relating to people and dealing with normal life circumstances.

The point is that sometimes it’s useful to talk about mental illness not in terms of diagnoses but in terms of symptoms. What triggers these symptoms? Which techniques help alleviate them?

So if a person looks up a mental disorder online and thinks, “Huh, this sounds a lot like me,” that realization can help them find ways to manage their symptoms whether or not those symptoms actually qualify as that mental disorder.

This is especially true because the diagnostic cut-offs for many mental illnesses are rather random. For instance, in order to have clinical depression, you must have been experiencing your symptoms for at least two weeks. What if it’s been a week and a half? In order to have anorexia nervosa, you must be at 85% or less of your expected body weight*. What if you haven’t reached that point yet? What if you don’t have the mood symptoms of depression, but you exhibit the cognitive distortions associated with it? Acknowledging that you may have one of these disorders, even if you don’t (yet) fit the full criteria, can help you find out how to manage the symptoms that you do have.

4. It helps them find solidarity with others who suffer from that mental illness.

I understand why some people with diagnosed mental illnesses feel contempt toward those who self-diagnose. But I don’t believe that sympathy and solidarity are finite resources. If someone is struggling enough that they’re looking up diagnostic criteria, they deserve support from others who have been down that path, even if their problems might not be “as bad” as the ones other people have and/or have not yet been validated by a professional.

Acknowledging that you may have depression (or any other mental illness) can help you find others who have experienced various shades of the same thing and feel like you’re not alone.

My take on self-diagnosis comes from a perspective of harm reduction. The idea is that strategies that help people feel better and prevent themselves from getting worse are something we should support, even if these strategies are not “correct” or “legitimate” and do not take place within the context of established, professional mental healthcare.

We should work to improve professional mental healthcare and increase access to it, especially for people in marginalized communities and populations. However, we should also acknowledge that sometimes people may need to help themselves outside of that framework. These people should not be getting the sort of condescension and eye-rolling they often get.

~~~
*The diagnostic criteria for eating disorders are expected to improve with the release of the new DSM-V, but I’m not sure yet whether or not the 85% body weight requirement will still be there. In any case, this is how it’s been so far.

Criticizing Psychiatry Without Throwing the Baby Out with the Bathwater

So, I read this article in The Atlantic called “The Real Problems with Psychiatry” and…I’m torn. The article is an interview with this guy Gary Greenberg, a therapist who has previously written a book called Manufacturing Depression: The Secret History of a Modern Disease and has now followed that up with The Book of Woe: The Making of the DSM-5 and the Unmaking of Psychiatry.

Now, to be clear, I haven’t read either of these books. I might, just to see the full depth of his arguments. But I decided to read the interview anyway and assume that he accurately represented his own claims in it.

Parts of the interview, I think, are really on point. Greenberg discusses the history of the DSM (the manual used to diagnose mental disorders) as a way for psychiatry as a discipline to establish credibility alongside other types of medicine. He criticizes the DSM on the grounds that the mental diagnoses that we currently have may not necessary be the best way to conceptualize mental illness, and he thinks that once we gain a better understanding of the brain we will find that they have little to do with the physical reality of mental illness:

Research on the brain is still in its infancy. Do you think we will ever know enough about the brain to prove that certain psychiatric diagnoses have a direct biological cause?

I’d be willing to bet everything that whenever it happens, whatever we find out about the brain and mental suffering is not going to map, at all, onto the DSM categories. Let’s say we can elucidate the entire structure of a given kind of mental suffering. We’re not going to be able to say, “here’s Major Depressive Disorder, and here’s what it looks like in the brain.” If there’s any success, it will involve a whole remapping of the terrain of mental disorders. And psychiatry may very likely take very small findings and trump them up into something they aren’t. But the most honest outcome would be to go back to the old days and just look at symptoms. They might get good at elucidating the circuitry of fear or anxiety or these kinds of things.

I don’t know if he’s right. But I suspect that he might be.

He also makes a great point about the fact that we often assume that anyone who acts against social norms, for instance by committing a terrible crime, must necessarily be mentally ill:

It’s our characteristic way of chalking up what we think is “evil” to what we think of as mental disease. Our gut reaction is always “that was really sick. Those guys in Boston — they were really sick.” But how do we know? Unless you decide in advance that anybody who does anything heinous is sick. This society is very wary of using the term “evil.” But I firmly believe there is such a thing as evil. It’s circular — thinking that anybody who commits suicide is depressed; anybody who goes into a school with a loaded gun and shoots people must have a mental illness.

Greenberg also discusses how mental diagnoses have historically been used to perpetuate injustice, such as the infamous “disorder” of “drapetomania,” which was thought to cause slaves to try to escape their masters, and the fact that homosexuality was once considered a mental illness (and other types of sexual/gender variance still are).

He also talks a lot about how the DSM and its categories are tied in with all sorts of things: scientific research and mental healthcare coverage, for instance:

To get an indication from the FDA, a drug company has to tie its drug to a DSM disorder. You can’t just develop a drug for anxiety. You have to develop the drug for Generalized Anxiety Disorder or Major Depressive Disorder. You can’t just ask for special services for a student who is awkward. You have to get special services for a student with autism. In court, mental illnesses come from the DSM. If you want insurance to pay for your therapy, you have to be diagnosed with a mental illness.

The point about needing a DSM diagnosis in order to receive insurance coverage is really important and cannot be overstated (in fact, I wish he’d given it more than a sentence, but again, he did write books). As someone who plans to eventually practice therapy without necessarily having to formerly diagnose all of my clients, this matters to me a lot, because it may mean that I might have to choose between diagnosing and working only with clients who can afford therapy without insurance coverage (which, at at least $100 per weekly session, would really not be many).

But sometimes Greenberg makes a good point while also making a terrible point:

One of the overlooked ways is that diagnoses can change people’s lives for the better. Asperger’s Syndrome is probably the most successful psychiatric disorder ever in this respect. It created a community. It gave people whose primary symptom was isolation a way to belong and provided resources to those who were diagnosed. It can also have bad effects. A depression diagnosis gives people an identity formed around having a disease that we know doesn’t exist, and how that can divert resources from where they might be needed.

First of all, we don’t “know” that depression “doesn’t exist.” We know–or, more accurately, some of us suspect–that the diagnosis we call “major depression” might not map on very accurately to what’s actually going on in the brains of people who are diagnosed with it. What we call “major depression” is a large cluster of possible symptoms, and since you only have to have some of them in order to be diagnosed, two people with the exact same diagnosis could have almost completely different symptomology. Further, because depression can vary like a spectrum in its severity, the cut-off point for what’s clinical depression and what’s not can be rather arbitrary. It’s not like with other types of illnesses, where either you have a tumor or you don’t, either you have a pathogen in your bloodstream or you don’t.

Second, Greenberg doesn’t seem to extend his analysis of the effects of the Asperger’s diagnosis onto other disorders. There is absolutely a community of people who have (had) depression, eating disorders, anxiety, and so on. Those communities are absolutely valuable. My life would be demonstrably worse without these communities. They haven’t “diverted resources” from anything other than me wallowing in self-pity because I feel like I’m the only person going through these things–which is how I used to feel.

Right after that:

What are the dangers of over-diagnosing a population? Are false positives worse than false negatives?

I believe that false positives, people who are diagnosed because there’s a diagnosis for them and they show up in a doctor’s office, is a much bigger problem. It changes people’s identities, it encourages the use of drugs whose side effects and long-term effects are unknown, and main effects are poorly understood.

Greenberg is correct that false positives are a problem and that diagnosing someone with a mental illness that they do not have can be very harmful. However, his dismissiveness of the problem of false negatives–people who do have mental illnesses but never get diagnosis or treatment–is stunning coming from someone who is a practicing therapist. Untreated mental illnesses are nothing to mess around with. They can lead to death, by suicide or (in the case of eating disorders) otherwise. Even if things never get to that point, they can ruin friendships, relationships, marriages, careers, lives. While I get that Greenberg has an agenda to push here, some acknowledgment of that fact would’ve been very much warranted.

In short, Greenberg seems to make the logical leap that many critics of psychiatry and the DSM do; that is, because there is much to criticize about them and because it’s unclear how valid the DSM diagnoses are, therefore depression is “a disease that we know doesn’t exist” and antidepressants are harmful (that’s a whole other topic, though).

Antidepressants may very well be harmful. Diagnostic labels may also very well be harmful, for some people. But I think the stronger evidence is that untreated mental suffering is harmful, and sometimes therapy just isn’t enough and cannot work quickly enough–for instance, for someone who is severely depressed to the point that they can’t possibly use any of the insights they may gain in therapy, or to the point that they are about to commit suicide.

I hope that one day we’ll have all the answers we need to minimize both false negatives and false positives. But for now, we don’t, and I worry that attitudes like Greenberg’s may prevent people from getting the help they urgently need, as much as they may simultaneously promote vital criticism and analysis of psychiatry and the DSM.

~~~

Note: I didn’t fact-check everything Greenberg said in the interview because I’m hoping that The Atlantic employs fact-checkers. But if you have counter-evidence for anything in that article, even parts I didn’t quote here, please let me know.

Goodbye Lexapro

[TMI Warning]

Today marks the end of an era of my life.

Today I took my last dose of antidepressants, and tomorrow, for the first time in a year and a half, I will get up in the morning and (purposefully) not take that pill again.

I went on Lexapro as a last resort in July 2010. I won’t go into all those details here since I’ve written about it before, but I’ll say that, at the time, I had no other choice. When a body has been critically injured, it enters a coma. I was in the mental version of that.

Lexapro did a lot of things to me, some expected, some not so much. I stopped crying every day and wanting to kill myself, at least for a while. I also became, according to my friends, more lively, more social, and visibly happier.

But then, there was the other stuff. Lexapro broke up the one meaningful romantic relationship I’ve had in my life. (Was it destined to break up anyway? Now I’ll never know.) It altered my values and beliefs for some time and turned me into the sort of person I would’ve hated a few months before. Now I’m back to my normal self, thankfully.

It was also a cruel helper at times. If I missed just a day of it, I’d be a wreck by nightfall. If I missed two days, the withdrawal symptoms kicked in, and they were horrible. I’d be dizzy, nauseous, barely able to walk, completely unable to explain to people why I was suddenly sick when I’d been fine just that morning. (“Sorry, I’m going through drug withdrawal” isn’t really an effective explanation for most people.) The worst symptom of antidepressant withdrawal has no official name, but depressives refer to it as “brain zaps.” They’re momentary sensations of being shocked or stunned in the head and they happen every few minutes or so, or even more often.

Theoretically, of course, there’s no need to ever miss a day of a prescribed medication, but when you factor in insurance issues, CVS’s constant fuckups, weird sleeping schedules, and other crap, it happens pretty often. I remember one awful time when I forgot to bring my medication back to school from break with me and I had to get my parents to ship it. Those were an unpleasant few days. Another time, my psychiatrist refused to renew my prescription unless I came in to see her, but I’d already be back at school by the time she had her first available appointment slot, and there was no way I could skip classes to drive six hours home to Ohio. She wouldn’t budge.

I’m not going to go into a whole condemnation of psychiatry or the pharmaceutical industry because they gave me back my life. However, I will say this: there is so, so much work to be done.

My psychiatrist prescribed me Lexapro after a nurse practitioner talked to me for ten minutes, and she for about five. She said that “academic stress” was causing my depression and that antidepressants would help me deal with it. She must’ve missed the part where I said that my depression started when I was 12 years old. She also apparently missed the glaring cognitive distortions and emotional issues I was having, and had been having for years and years. She oversimplified my problems and thus prescribed a simple remedy.

It took a while to even begin to sort out what the problem really was, and I’m still not there yet.

Some other things my psychiatrist didn’t tell me: the personality changes. The withdrawal symptoms. The fact that I was more likely than not to have a relapse (which I did). And, of course, the fact that you don’t really recover from depression. You only learn how to avoid it for bursts of time.

That was stuff I shouldn’t have had to learn through experience.

Now I look at that almost-empty bottle and I just can’t look at it with a sense of gratitude. I will never be an enthusiastic advocate of psychiatry, though I will continue fighting for the rights of patients to obtain complete information about medication and to make their own decisions.

I look forward to the end of that daily reminder of what I’ve lost. For the past year and a half, I have started every day by taking Lexapro and remembering that I’m not okay. Now I won’t have that anymore. Now I’ll be able to go half the day, maybe even an entire day, without thinking about that part of myself.

I’m not nearly naive enough to think that this is the end. For all I know, I’ll be back on the medication in a month. I’m almost certain that I’ll be back on it within the next few years.

But for now, at least, I’m done with it.

For now, the only things I’ll be taking in the morning are a multivitamin and a shower.

Normal, just like everybody else.

Yes, We Need Psychiatric Labels

Recently I stumbled upon a Huffington Post article by one Dr. Peter Breggin, who lists himself on HuffPo as a “reformed psychiatrist.”

This should’ve told me everything I needed to know, but I read on.

The article is titled “Our Psychiatric Civilization” and tries to make the tired point that in this day and age, we are defining ourselves by our psychiatric diagnoses and not by anything else. It’s difficult to fully dissemble this argument because Breggin unceremoniously shoves so many unrelated arguments into the same sad little article, but his main points seem to be:

  • Psychotropic medication is overprescribed.
  • Psychiatric diagnoses (i.e. major depression, bipolar disorder, ADHD, etc.) oversimplify the human condition.
  • Back in the good ol’ days, people apparently did a lot of spiritual soul-searching rather than resorting to all those damn pills.
  • The way people connect in our culture is through their psychiatric diagnoses.

I honestly don’t know which planet Breggin is living on, but it’s certainly not mine. I’ve addressed the overprescription crap elsewhere so I won’t talk about that now.

As for the second point, this is, to a certain extent, true. Psychiatric diagnoses DO oversimplify one’s psychological state, but that’s because you have to have a starting point. If you’re diagnosed with ADHD, you know that, some way–whether it’s through medication, therapy, or some combination of the two–you need to learn how to focus your attention better. If you’re diagnosed with major depression, you know that you need to somehow learn how to fix your cognitive distortions and become more active. If you’re diagnosed with seasonal affective disorder, you know that you need to do things that counteract the shortening of the days–use a full-spectrum lamp, take vitamin D supplements, etc.

Just as knowing that I have, say, asthma or the flu doesn’t describe the full state of my entire body, a psychiatric diagnosis isn’t meant to describe my entire psychological condition. Breggin seems to think that we live in a world where all we know about each other is what pills we’re popping, and nothing else. This is ludicrous. In fact, that’s something we don’t often know, given the stigma that still exists regarding mental illness.

Breggin goes on to claim in a condescending way that there’s no reason for people to connect with each other based on psychiatric diagnoses at all:

Patients ask me, “Should I join a bipolar support group?” If I were flippant, which I never am with patients, I could respond, “Only if you want support in believing you’re bipolar and need to take psychiatric drugs.”

My first thought upon reading this drivel was, Thank G-d he doesn’t say this to patients. My second was more like, What the fuck?

The idea that seeking support from others who face similar issues as you is somehow disempowering and promotes seeing oneself as a victim is quite possibly the most batshit stupid thing I’ve ever heard from someone whose profession is helping the mentally disordered. Shockingly enough, people like to feel like they’re not the only ones with problems. Perhaps this has truly never occurred to Dr. Breggin.

Quite the contrary, I have benefited immensely from connecting to other people who have depression and other mental disorders. Many of my friends have one, and together we’ve formed a sort of support network. All of us can always count on having someone to talk to, and those of us who aren’t as far along in the process of recovery as others can ask friends for advice. I don’t know where I’d be right now without that.

(Maybe in a perfect world, we could just have support groups called “Fucked-up People Support Group,” but somehow this seems counterintuitive.)

Anyway, psychiatric diagnoses can also be immensely helpful in explaining to healthy friends and family what the deal is. While Breggin seems to think that “depressed” is some sort of insulting, disempowering label I ought to reject, let me tell you some of the labels that my close friends and family described me with before they knew I had depression:

  • overdramatic
  • overemotional
  • bitchy
  • attention whore
  • immature
  • insensitive
  • selfish
  • crazy
  • weird
  • fucked up

Yeah um, I’d take “depressed” over that any day.

Not surprisingly, you don’t make a particularly strong case for yourself when you try to insist to people that, no, it’s not that you’re really overdramatic, it’s just that you have this problem with, well, being overdramatic, and you’re trying to work on it, you promise!

Trust me, that doesn’t work. What does work is saying, “I have a disorder called depression that distorts my thinking and sometimes makes me act in a way that seems overdramatic. With therapy and medication, it’ll improve.”

Apparently, though, Dr. Breggin is much too intent on destroying his own profession to allow those with mental illnesses even that small comfort. After all, he makes it pretty obvious that the reason he hates psychiatric labels so much is because they make it possible to prescribe medication, and that, of course, is a big no-no.

If I got a dollar every time some well-meaning fool tried to inform me that the medication that saved my life is unnecessary, I would have enough money to actually afford a therapist.