Mental Health

Not Otherwise Specified: The Pain Of Hearing ‘I Don’t Know’

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A note on labels: Like many people with mental health struggles, I’ve experienced my fair share of misdiagnoses. Since writing this piece, I’ve finally been correctly diagnosed with obsessive-compulsive disorder and complex PTSD, which have been life-changing realizations for me. That said, I hope that the resources I created in the past can still be helpful. (Jan 2019)

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For the last six years, I’ve held on tight to my bipolar diagnosis – it kept me afloat in the midst of very turbulent seas. It was a framework that helped me understand my thoughts, feelings, and behaviors; it was a word that helped me find a community of people who were similarly struggling.

I remember listening to Mary Lambert’s song “Secrets” for the first time, with its opening line, “I’ve got bipolar disorder / my shit’s not in order,” and feeling the immediate connection and kinship that only comes from two people with the same endless, chaotic battle.

I felt like that song was for me.

I felt seen in that moment. I felt seen in every moment when someone I knew or someone with visibility came out and said that magic word: Bipolar, bipolar, bipolar, making me feel more and more real every time they stepped out of the shadows.

“Bipolar,” as a label, made me feel safe – like there was sense in the senseless, an anchor in an uncertain storm.

And that’s why, after a painfully long and involved evaluation, it was difficult to hear a psychiatrist say to me, “I don’t know if you have bipolar disorder.”

Mood Disorder Not Otherwise Specified, they told me, otherwise known as the grey area between depression and bipolar. Because they couldn’t just let me have depression, either – they left it ambiguous, leaving me straddling two words and two communities and two answers, pulling the ground out from underneath me.

In so many ways, this label was hollow. It was a question more than it was a statement. I couldn’t turn to the world and say, “This is what I’m going through” or “this is how much it hurts.” There’s no measure of severity, or list of symptoms, or a simple story to tell the world, tell my parents, tell my partner what’s happening to me.

Not Otherwise Specified is an empty place that tries to hold the entirety of your struggle, tries to say everything there is to say, without really holding or saying anything at all.

As if to say, “Your mind is out of bounds and we are out of words.”

My suffering has colored outside the lines like a child with no sense of where it all starts and stops.

I have no sense of where it all starts and stops.

In addition to my Mood Disorder Not Otherwise Specified, they have other things to specify: Obsessive Compulsive Disorder (OCD), which I should’ve suspected but never knew, and Borderline Personality Disorder, which they suspect is the root of my misdiagnosis.

It all feels true enough, but it also feels too new.

This, in addition to my agoraphobia, in addition to my alcohol use disorder, which both come with their own pain, a pain that I sometimes feel all over my body instead of just in my mind.

What happened to me?

There are so many names for my trauma, and so many names still missing, some more precise than others.

Just like that, I was OCD, I was borderline – two things I’d both always been and never been before – and bipolar, the very center of it all, slipped from my grasp and became an unknown, as if it were never here.

And maybe it wasn’t.

People say that we invest too much in labels, that we aren’t our diagnoses. I can’t say for sure that they’re right or wrong.

But I suspect they don’t know the loneliness of suffering something nameless. I suspect they don’t know the confusion of lacking the words to convey your pain. And I suspect they don’t know the relief when the words lead you to someone else who knows that pain, too.

When I lost “bipolar,” I lost more than just a label – I lost the story that helped me make sense of it all, the words to describe my pain, and the connection to other people who understood both.

Not Otherwise Specified is not a story, not an answer, not a connection. It’s a placeholder, a seat saved for something or someone that hasn’t yet arrived.

And what am I supposed to do with that?

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15 comments

  1. Thank you so much for writing this. I suffer from depression and anxiety, as well as some symptoms of psychosis. For the longest time, it seemed as tho doctors were afraid to put a name on any of it because they couldn’t explain it all. I understand the pain of not knowing, not having the security of knowing. For what it’s worth, please know that you are not alone and that there are others who understand and will stand with you through the pain.

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  3. Sam, diagnosis in mental illness is an art, not a science. I know because I have struggled many times with, “What label do I put on this person’s pain, confusion, behavior, struggles, and emotions?” I can be hard, especially when the history is complicated or includes factors with which the diagnoser is personally unfamiliar, As you have noted before, transgender and gender fluid are very much in that category. There is, as you say, a security and certainty in having a diagnosis that effectively explains your experience to you. I don’t know how they got from Bipolar to Mood Disorder NOS, but there is one big feature of your current experience I don’t see reflected in that laundry list of diagnoses, and that is what you wrote about in your previous post, being blocked in your transition. I am in no position to deeply understand how that is affecting you and if I were doing that evaluation would have to ask a lot of questions and listen hard to the answers to factor that in. Those who are doing the blocking “for your own good” are likely to have a blind spot there. Anyway, i don’t know what hoops you had to jump through in the evaluation and just have to say, yes, ______NOS is unsatisfying. In my work it was usually used early in treatment in the hope that further experience would bring a clearer, more specific picture. If it helps you to understand and live your life to think of yourself as bipolar, I say to go for it. Let the docs put whatever they like on their insurance claim forms. Again you bring up a treatment experience issue that must be common to many. Sorry your are having to go through this.

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    1. I always look forward to reading your comments. Thanks for all of this validation and insight. 🙂 I’m trying to just take things a day at a time, and be open to whatever possibilities there are. I’ll lean into whatever serves me at that moment – right now, I’m not sure if bipolar does, but depression does without a doubt. So maybe that’s where I land for a while. We’ll see.

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      1. One of my favored mottoes is, “Whatever Works” – BTW, I was wondering if this evaluation was related to decision making about getting on with your transition or the system resisting it.

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      2. The evaluation was actually totally separate – this particular doctor isn’t looped into my transition-related care. But speaking of, I did get approved (FINALLY) to go up on my testosterone dosage today. 🙂

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      4. It’s an enormous relief! I’m scared that it’ll set off more mental health issues, but I’m willing to take the risk. I know this is what I need – even if it’s a bumpy ride to get there.

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  6. I do understand how you feel right now, not knowing where you belong… Your relief about knowing your sense when you’re told that you’re bipolar, then that being stripped away… It’s like me thanking the doctor that my disease could be lupus instead of cancer.. I know what u mean… At least yes… You’re finally diagnosed! But yes, same with you, as i wait for the lupus test, other tests came out first and the doctor thinks it may not be lupus… So yeah, i am undiagnosed yet again.. And i dont know what i am being treated for.

    It is hard to have OcD. I had (have) ocd but it’s triggered by anxiety. I dont usually have it… But it’s hard… I feel for you..

    Thanks for sharing… If everything else doesnt make sense… Remember, you do make sense 😉

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  8. Hi Sam – I hear ya. For the last 33 years, I’ve been in some degree of depression. But in 2001, my first shrink diagnosed me with the dreaded “Bipolar Type II”, which I never agreed with and never fully understood (does anyone?). Every successive shrink would simply accept this diagnosis, despite the level or consistency of my depression (14 hospitalizations for dep/suicidal ideation in the last 12 years). Finally, last fall, a shrink did an evaluation to see if I was eligible for a new treatment called TMS (transcranial magnetic stimulation) – and re-diagnosed me. “I don’t think you’re bipolar. I think you have Major Depressive Disorder.” I felt that the whole time, yet was not validated by anyone in the medical profession. I struggled with this identity – and misdiagnosis – for fourteen years! Now, I feel as though someone has finally listened to me, but at the same time, I’m no longer “bipolar” – I’m “just” depressed. And, by the way, the TMS? Has rid me of probably 80% of my depression for the last 6 months. Feels great! Weird, but great. You may want to look into it. I consider it a miracle treatment.

    I look forward to your posts each week. Your openness, thoughtful consideration of things, and willingness to share are admirable, and they help people like me – a *mentally ill*, alcoholic, lesbian who also suffers from anxiety and borderline personality disorder. I hope you know how much your followers appreciate you.

    Peace,
    Laura

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