Really Embracing People with Mental Illness

Self-disclosure is scary, and we’re taught not to do it. Sometimes, that’s the right call – one study I read suggested 85% of physician self-disclosure in care was not helpful to the patient. But it’s important to just talk about the experience of being ill, particularly when other privileges mean I might get taken more seriously than some of my siblings, and particularly when it’s the experience of mental illness. In my case, that experience was with anorexia, which started around 2001 and tailed on and off over the next several years (“pulling myself up by my bootstraps”), followed by progressive, fairly steady recovery after treatment (in Chicago, in 2008-2009).

An estimated half of the population will never experience mental illness of any kind. Far fewer will experience an eating disorder, specifically, and none will know just what it was like to be me, since my anorexia experience is not like your bipolar experience, and it is not even, truly, just like other anorexia experiences. So, you may not understand “us.” For we do still become an us, for people with mental illness experiences are a marginalized group, of sorts.

That 85% statistic – it arises when self-disclosure is really to make me feel better. That’s where self-disclosure goes wrong. I’m not posting this for me. I’m posting it for all of you who will never know what this is like.

This is my MMPI profile. I took the test eleven years ago, in the winter of my first term in psychology graduate school, at the University of Florida, at the age of 29.

20160131 - 2005 Mira MMPI

My MMPI-2 taken just over eleven years ago, during my first year in graduate school.

I’m not going to tell you everything about how to read this. The short version of the scales on the left is that I didn’t have a biased responding pattern – I told it like it was. In the past, at many psychology programs, it was actually a requirement (dating back to the intermixing of psychoanalytic blood into psychology) to not only take the MMPI but undergo psychotherapy with a faculty member, and that MMPI would actually be used clinically on the graduate student. There is so much wrong with this that one scarcely knows where to begin. At Florida, we were asked to take it, but we could fill in whatever responses we wanted, and no one saw our MMPIs but us. But in my case, I wanted to see what it said, and I was honest – navigating the thin line between covering over my flaws and making my problems out to be worse than they really were.

The good stuff is the right-hand side. Ignore scale 5. It basically says, “She’s a girl.” That reveal hadn’t been done, yet. For the rest of the ten scales on the right, scores above the red line are called “elevations,” pretty much just like any other elevated lab result. Of the nine scales (ignoring the girl one), six are elevated. That could be interpreted as being pretty bad news. By general practice, this much elevation in an unbiased profile is worrisome.

There’s a lot to the profile. Some have commented that young women seeking psychological help actually have this pattern not uncommonly – in fact, it almost seems like it’s a young-women-figuring-themselves-out scale pattern (at least in our culture and time). Some choice statements about the profile – that I may be trying to change the way the world perceives me (very true, in those days), and that women like me “tend to approach problems with animation, are sensitive, and feel that they are unduly controlled, limited, and mistreated” (okay, yeah, so it’s like you KNOW me… and thank you for the Oxford comma).

So don’t say, “Well, these numbers didn’t represent you.” They did. I was pretty sick at that time, and I was certainly trying to figure myself out and trying to deal with a world that thought I was things I was not. On all sorts of levels. Although I made so many new friends in Gainesville, the loss of stability of living in one state for all my life was significant. My diet was restrictive, and although I was stabilizing, and I made a conscious decision to be ready to be able to take care of patients the next year (no clinical work in year one), I had gotten to a point where I was always hungry, I had lost so much fat that my back hurt sitting in hard chairs for very long at all, and food scared the hell out of me. I would be done with purging – I may even have been by then, but if I had, this was a brand new accomplishment. That bit about becoming paranoid under extreme stress? Yeah… ummm, that happened a couple of times, that year. There were other times, sadly, and this is kind of a statement about graduate school, that my paranoia was not paranoia at all, but well-founded and cross-validated fear – and since I know this facet of how I work, I am sometimes overly conservative in admitting that I am not being paranoid and that, rather, my fears are justified and my persecution is real.

I pulled up a 2008 study of women who had midlife eating disorders. My profile wasn’t totally standard – in particular, somatic distress was much higher in most of them, whereas it wasn’t an issue for me, really (I sort of trooper’ed through when my back hurt, for instance). The mean profile , a 2-3 combination, is different than my 6-7 – my highest scales were much more elevated than the mean participant in this study. Other data, though, including anorexic teen girls, was more similar to mine.  Meaning simply, that, together with what I mentioned above, this data was actually pretty consistent with how I was doing that year.

There’s more that I’m not going to bother turning into pictures and putting in this blog. Although there are many changes that were part of the anorexia experience that have been permanent, generally speaking, my mental health has been better, most of my life – consistent with this, that old MMPI is very clear that it is short-term distress that is being captured and not long-term personality problems.

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There’s a teeny-tiny self-portrait in there.

In the context of that distress, what did I accomplish in the year (roughly) centered on this data point? Well, having been accepted into a world class graduate program, I moved out of my home state (from Michigan, to Florida) for the first time, ever. I completed the jump from engineering to psychology. I acclimated to graduate school and made significant progress towards my Master’s Thesis, as well as making many new friends and doing well generally in my new program. I read dozens of books (for work and play) and god-knows-how-many journal articles. I wrote a novel (I never liked the ending, so it’s been sort of a shelved project, although I hope to figure out the ending and resurrect it someday). I ran my first (and only) marathon (I’ve since run numerous half marathons and a couple of 25k races, although right now, I just run short distances, for fun). As far as my anorexia went, I stopped purging, permanently, that year. I didn’t gain back to a healthy weight for some time after that, but I stabilized, reversing the course of weight loss over the prior three years and stepping away from the rock bottom and ridiculously unhealthy low weight I had hit the prior summer.

Don’t get me wrong. I’ve had other rather remarkable years. But the summer of 2004 to the summer of 2005 is a contender, for sure.

I saved this MMPI profile all this time, and after a number of years (or more particularly, once I was board-certified and there was less potential to use this to discriminate against me), I started jokingly mentioning it in talks I gave. I came across it cleaning up some of my files in storage, and I pulled it out to scan a copy, since it’s something I want to keep. And it occurred to me that it was time to talk about this openly. I recognize it’s truth – that it did, indeed, identify me, but I incorporate all I accomplished that year, because it certainly did not define me in any holistic sense.

No one needs to write a blog about how much someone can do or be or accomplish while they have some physical ailment. It just goes without saying. It doesn’t, for us. And sometimes it isn’t true for us (just like it isn’t always true for them). Sometimes it wasn’t true, for me. But, it’s a single-dimensional lens to look at that MMPI profile and over-infer what the person who holds it could or could not do. You might have gotten her wrong. You might have gotten caught up on what sorry Admissions Committee even let her into graduate school, or point out the obvious, that she’s lucky to be alive (I am, every day). Think of it another way, as a story of the walking wounded. Think of it as a story of resilience. Think of what it portended, that in that time, 11 years ago, she could accomplish all that, for what I can do, now. And along the way, come to celebrate with me, instead of pitying me. For no one ever needed your pity.

Our Model of Suicide and Maintaining Mental Health Stigma

This is one of those short posts that started life as a comment on someone else‘s timeline on Facebook. My friend, Tania*, asked for people’s thoughts about the idea of legalized euthanasia, suicide, and/or physician assisted suicide. Her questions follow this article from the NYT last weekend.

Anorexia is my personal experience, but it's also relevant to me because there is so much policing around the expression of and fear around the honesty of us as women who are there (and to a lesser extent who were there) Source: @daniellehelm on Flickr

Anorexia is my personal experience, but it’s also relevant to me because there is so much policing around the expression of and fear around the honesty of us as girls or women who are there (and to a lesser extent who were there, and of course, of the men who’ve been there, too) Source: daniellehelm on Flickr

There was one book**, back when my struggle with anorexia was much more active, that was about a young woman who did eventually die (passively) – the young woman made an argument that, in her case, anorexia was terminal. Her argument was based on her experience trying a wide variety of both outpatient and inpatient treatments, and getting progressively sicker. It was a pretty sophisticated argument – it wasn’t a simple brinkmanship kind of argument. The anorexia world is full of these stories of people who drop down to unimaginable weights – like a person who weighed 120-130 lbs dropping all the way down to the sixties – who go on to survive and thrive. Marya Hornbacher is just the most widely celebrated of these stories***. But the young woman… well, actually, it wasn’t her making the argument – if I remember correctly, the book was written by her surviving father, who was telling her story, bravely even including her feelings about the terminality of the illness. Again, if I remember correctly, he didn’t necessarily agree wholeheartedly with what his daughter said, but he had given it deep thought, and he had come to the conclusion that it could not be cursorily written off (as many people are wont to do – for instance just cursorily saying the young woman in the NYT story shouldn’t be “allowed” to “choose” suicide). And, importantly, he recognized that he did not understand the illness like she did, because he had been there as an observer, but the battlefield had been her body.

As survivors (and proud of it!) we know an elemental joy of surviving that you, who have never survived, may not be able to understand. But in having survived, we come face to face also with the knowledge that our survival was not guaranteed, and if we take pride in our survivorship, that pride must recognize the sisters we lost. Source: @Rega Photography on Flickr

As survivors (and proud of it!) we know an elemental joy of surviving that you, who have never survived, may not be able to understand. But in having survived, we come face to face also with the knowledge that our survival was not guaranteed, and if we take pride in our survivorship, that pride must recognize the sisters we lost. Source: Rega Photography on Flickr

What’s important about this view is also that she was not saying that all people who are suicidal should end their lives – people who find this to be their solution are not saying, for instance, that no suicide prevention work should be done, or even that our efforts to prevent suicide should not be intensified. Rather, they are merely saying that an expectation of survival of their illness may not be reasonable.

I read this book more than ten years ago, and so it’s taken me a long time to evolve how I think about this. But, what stuck with me for a long time is that, when we talk about diseases and disorders that affect things other than the emotional brain, there are many, many things that don’t have a 100% survival rate. My fiancé had leukemia twice – he survived, and I am thankful, but we accept that a minority will not. For all kinds of leukemias integrated together, the five year survival rate is now just over 60%, meaning we accept that almost four in ten will not make it. Death may not have been a certain outcome in Teri’s case, but neither was life a certainty. If one ignores whether death was “one’s fault,” then the reality is that several mental illnesses – anorexia is one of them – have known rates of mortality. Anorexia is one of them.

When we talk about mental illness, there is not nearly often enough the kind attitude of survivorship mixed with pushing us all to do more, be more clever and resourceful, to help more people survive. My experience, anyways, is that this attitude is very different when talking about a non-mental illness that might take one's life vs. a mental illness that might take one's life. Source: A Leukemia and Lymphoma Society Light the Night Cancer Walk, Dave Overcash on Flickr

When we talk about mental illness, there is not nearly often enough the kind attitude of survivorship mixed with pushing us all to do more, be more clever and resourceful, to help more people survive. My experience, anyways, is that this attitude is very different when talking about a non-mental illness that might take one’s life vs. a mental illness that might take one’s life. Source: A Leukemia and Lymphoma Society Light the Night Cancer Walk, Dave Overcash on Flickr

In contrast, we assume – without a clear basis other than that we believe that people are responsible for their mental illness in a way that people are not responsible for their physical illness – that mental illness cannot be terminal (maybe, excluding dementias, although I think we mostly consider dementias neurological and not psychiatric).

That basis – the belief that people are responsible for their mental illness – is a deeply problematic one for a variety of reasons. The fact that psychotherapy can help people help themselves feel better really does not validate that idea – all manner of disorders and diseases are amenable to behavioral “treatments,” not just mental illnesses. Schizophrenia is not only significantly more heritable than, say, hypertension (compare this and this), but although both are amenable to behavioral treatments, behavioral treatments (like weight loss, diet, exercise) have higher effect sizes by far for hypertension. Infectious diseases are not given the stigma of mental illness based on one’s having “chosen” the illness, even though they are clearly essentially completely behavioral, whereas almost no mental illness is considered completely behavioral by scientists****.

The result is that, when we think about some other health problem, that has a death rate, we assume those deaths might be preventable, if we get cleverer and come up with new technologies and new medical practices and new ways to help people with prevention. In contrast, when we think about suicide, we assume that those deaths are preventable, and that nothing needs to be done to prevent them except to coerce people to not commit suicide, to call people who commit suicide cowards, to criminalize suicide, etc. To me, that’s deeply problematic, whether or not one believes one should be able to “choose” suicide.

Moreover, it should be deeply problematic to everyone who is trying to reduce / prevent suicide, as well. It pushes suicide into a deep taboo. And it’s hard to treat something that’s taboo. And, of course, it’s deeply problematic for people with mental illness even when suicide is not a part of the conversation.

So, to me, do I support the policy Belgium enacted? I probably do. But the thing I support far more firmly is destroying stigma around mental health. I believe in it for me. I believe in it for all the friends with eating disorders who saved my life, time and time again, ten years ago. And I believe in it for all my friends who live with mental illnesses that I haven’t experienced in the way I experienced anorexia and so don’t fully understand.

I believe in it for all of you, too, who have never been there, and so who find it easy to pass judgment. At times, I yearned to be back in your blissfulness of ignorance, although today, I include my experience with anorexia alongside all the many things I am thankful for in my life. It made me the woman I am today. I am glad – daily – to survive, all the more because I know my survival was not guaranteed.

* God, what is it with me, I can’t even get past the italicized intro without a footnote. Just pausing here to say that Tania is such a heroine for the AutismFamily. Her particular passion is autistic (she coins “Aspien”) girls and women, and I love her work so much.

** Comment or message me if you know the book. I think it’s one I borrowed from the Jacksonville Public Library, the summer before grad school in psychology, which was the time of my rock bottom with respect to my own struggle with anorexia / disordered eating.

*** And I’m sure I’ve mentioned before how much of a heroine Marya is, and how amazing it was to, if only for a moment, meet her when she was here to speak.

**** Getting overly technical, susceptibility to a wide range of infectious disease is heritable. But again, the heritability of many mental illnesses is far higher than the heritability of many infectious diseases, if not most/all of them.