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)
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?