An update: Like many people with mental health struggles, I’ve experienced my fair share of misdiagnoses. Since writing this piece, I now know I have obsessive-compulsive disorder, ADHD, and complex PTSD. I hope readers who are struggling with multiple diagnoses don’t shy away from second, third, even fourth opinions. You deserve the best possible care! (Jan 2019)
How many is too many? This is what I asked myself when a psychiatrist – who I was seeing temporarily while my usual was on paternity leave – looked up from a stack of books and a database on his computer and said to me, “This is really complicated.”
When I asked him what he meant, he seemed a little worried when he said, “Your diagnoses and your medications are very… complex.”
I knew that. Every clinician that opened up my file knew that. Every pharmacist that ever filled my prescriptions. Every friend that finally realized how much energy goes into being a mostly-assembled Sam Dylan Finch.
With my bipolar diagnosis reinstated after a hypomanic episode triggered by Zoloft, it could now rejoin my growing list of neuroses: borderline personality disorder, obsessive compulsive disorder, agoraphobia, substance use disorder, and generalized anxiety and/or ADHD depending on which clinician you ask.
This doesn’t even capture the psychotic and dissociative features of a few of the illnesses I deal with.
Some people would call these “co-occurring diagnoses” on a good day but I would actually just call these a straight up clusterfuck.
People like to tell me that “it’s all just labels” and that the words are ultimately unimportant. But they weren’t there ten years ago, when I was a teenager that fantasized about ending my life, tormented by obsessive thoughts and deep depression. Back then, the only thing I wanted was to understand what was wrong.
My psychiatric diagnoses have given me that understanding, and affirmed that it wasn’t just in my head, that it wasn’t made up, that I wasn’t alone.
People can tell me that my diagnoses are just words at the end of the day, but those words are important to me, and that’s what makes them important. And the impact of these disorders is something that I have to live with every minute of every day – so why wouldn’t it be critical to name something that’s so pervasive in my life?
(Honestly, when people tell me it’s just words, I laugh. If you woke up to the sound of a chainsaw every morning with no explanation, would you ignore it altogether in favor of just saying, “Well, it’s just noise”?)
But I would be lying if I said my psychiatric diagnoses always make me feel empowered. The truth is that while I am glad to have a name for a once invisible battle, I’m also afraid.
I’m very afraid. I’m afraid because, like many clinicians have told me, this is complicated. Complicated to understand. Complicated to treat. Complicated to manage. I’m afraid that maybe there’s such a thing as “too mentally ill” or “too many mental disorders,” and that there will never be a “normal” for me – that I’ll always be swimming upstream.
I’m afraid of being hospitalized again. I’m afraid of being hospitalized again and again, because statistically this is likely. I’m afraid of attempting suicide again. I’m afraid of attempting again and again, because this, too, is possible and maybe even likely.
People often tell me that I’m not a statistic. I know this is true. But we can’t also pretend that statistics have no bearing on what my future might look like. I can’t ignore the fact that I am vulnerable. And I go to bed every night knowing this – knowing that I have a lot of good reasons to feel unsafe, even on my best day.
The more diagnoses I’m given, the more overwhelmed I feel.
I am mistrustful and fearful of my own mind – how it seems to always be working against me, how even my best efforts are sometimes not enough to stay in control. I never seem to know what’s real and what’s part of an illness.
I don’t know where each illness stops and I begin. I’ve spent a lot of the last two months confused, feeling claustrophobic in my own head, like I need to get out of here because there’s no room for me, like the wind is constantly being knocked out of me.
In conversations about mental health, we often talk about people who have one or two disorders. And I’m usually somewhere on the sidelines, wishing people like me were more visible – people who have so many diagnoses, they sometimes lose track of themselves, sometimes lose themselves to the fear of what they’ve become and could become.
I am an optimistic and determined person on the whole, and I still lose myself to that fear from time to time. When my psychiatrist quietly acknowledged the complexity of my trauma, I wondered if it’s possible to be so mentally ill that you become impossible to care for, impossible to help, impossible to love.
I spend a lot of time worrying that I can’t be loved.
In a society that tells us we’re broken if we have one mental illness, what happens when you have six?
Can you ever really be honest about who you are and what you’re going through without seeming too crazy? Too hopeless? Too much? This is the perpetual question for me, as someone who is both a person offline (go figure) but also an activist and writer online, who wants to create the space for people to be authentically themselves, but has to navigate the same stigma, too.
I think with all of the fear that I’m experiencing lately, I’ve finally gotten to a point where I’m tired of being isolated like this. I want to create a space for all of us to own how terrifying it is to be told we’re “complicated.”
Being complicated sucks. Being complicated hurts.
I remember that when I was initially diagnosed with just depression as a teenager, I was told by clinicians that my depression was very treatable, always emphasizing a positive prognosis and long term goals.
At this point in my life, when I meet clinicians, we only ever talk about today – we never talk about the future in any capacity. I think because neither of us knows what to say.
And that’s what my psychiatric journey has looked like: a lot of subtle ways in which it was communicated to me, with each new doctor and each new name, that being “complex” means difficulty – difficulty treating, much less supporting or affirming.
But I’m tired of apologizing to clinicians, to friends, and even to readers for being messy. For having more issues than National Geographic. For giving “certifiably insane” a whole new spokesperson. And I know so many mentally ill people with countless diagnoses who are equally exhausted, trying to package things in a more presentable way so people will accept them.
Sometimes people have three, four, five, six, seven, eight, you-name-it diagnoses and if we aren’t making room for those people to show up authentically, we are failing the mental health community as a whole.
This work isn’t about making spaces for some of us. It’s about making room for all of us.
Having co-occurring diagnoses is a scary place to be. Sometimes it’s a hopeless place to be, especially when your clinicians seem a little defeated themselves and the people in your life don’t know how to help you.
Sometimes (often) people don’t even believe me. Sometimes they see it as a chance to write me off as beyond repair. Sometimes my mental illnesses go from being a concern to being a joke. Sometimes I’m dehumanized and pathologized to the point where I’m seen exclusively as a case study. In my life, I’m consistently reminded of how people have no idea how to treat other people with co-occurring diagnoses, especially as they increase in number.
If we can’t create support for folks like me, where else are they going to go? When else can they be themselves?
Psychiatric labels can be important to us, scary to us, even empowering to us – for me, it’s been all three. But one thing they’ll never be is the sole determiner of our worth. We are whole people with value, no matter how few or how many diagnoses we have.
That’s the truth. And it’s a truth we need to make sure everyone – especially mentally ill folks – know.