The Mighty Logo

What It's Like to Be Stuck in 'Diagnosis Limbo'

The most helpful emails in health
Browse our free newsletters

Hi, my name is Megan and I have [X]. I really miss being able to fill in that blank. Because now I have to say things like “Hi, I’m Megan and my mental health is garbage but who knows what’s really going on.” Sure, there are better ways I could phrase it, but that’s the gist. I miss having a label, having a reason.

I used to understand my emotional turmoil through the lens of bipolar disorder. At 19, I went to my university’s health clinic and said I thought I had bipolar. And it just… stuck. The therapist tried to tell me diagnosis was more of an art than a science, but I needed to know what was wrong right now, right this moment, so I pushed, and we never really considered alternatives.

Despite the fact I was the one who suggested bipolar (or perhaps because of it) I never stopped doubting my diagnosis. I wasn’t “bad” enough, I thought. This caused me great distress, but those I talked to about it always assured me I did, in fact, have bipolar. You hear it all the time: thinking you’re not sick enough is a hallmark of mental illness because it’s just your brain lying to you.

But what about when it’s not?

Diagnosis, as my first therapist said, is an art. Many diagnoses include overlapping symptoms, and the diagnoses themselves are just categories of symptoms, for the most part. This is what people tell me when I get hung up on my diagnosis (read: literally all the time). They say the diagnosis itself doesn’t matter; it’s treating the symptoms, taking care of yourself and getting better that really matters. Who cares what it’s called?

Well, first of all, me. Second, treating symptoms without understanding their underlying cause is like taking ibuprofen for a fever when you have a Staph infection. Sure, it’ll help reduce the fever, but you still have an infection, one which will continue to grow if undiagnosed.

This would be a much easier piece to write if I had a new diagnosis. I could write about my time in turmoil and uncertainty through the lens of a new diagnosis. I could say: “well, I was diagnosed with bipolar because of XYZ symptoms, but I’ve discovered those symptoms were really masking symptoms of [insert mystery diagnosis here].” But right now, all I know is my fever is a sign of some other infection, but I have no idea what.

This leads me to my first reason diagnosis is more than “just a label.” If you’ve just realized you’re in diagnosis limbo, you probably hear this a lot. “It’s just a label!” “Don’t worry about the label so much!” “Why do you want to label yourself?” Labels matter because when your brain twists everything around you, knowing what’s real matters. Profoundly.

The second reason diagnoses are important is because treatment relies on a correct diagnosis. For instance, in my case, when I was diagnosed with bipolar disorder, I was not prescribed SSRIs which are very reliable antidepressant medications, despite frequent, intense periods of depression, because they often trigger mania in people with bipolar. That made sense at the time, but if I don’t have bipolar, an SSRI might be able help me so much more than my current medications. But I won’t know what to try until I have a diagnosis.

The last reason I care about my diagnosis so much may not apply to everyone. For the last five years, my life has been more or less consumed by my mental health. Yes, I’ve done plenty of things in “real life,” but in my head? In my inner world? It is mental health all the time. I have come to define myself by my moods and thoughts and feelings, and I know that’s a bad thing. I know I’m not supposed to do that, but here’s the thing: I do, and I’ve been doing it for years, and now my sense of identity is intrinsically linked to these symptoms and possible diagnoses. Until I get the right one, I won’t know how to sift through everything and determine which feelings are real; which personality traits are “normal;” who I am underneath all the illness.

Despite the fact it takes several years for most of us to get a correct diagnosis, I haven’t found many articles about diagnosis limbo — about how scary and frustrating and lonely this is. About how it gets hard to talk about your mental health struggles because you no longer have the vocabulary. About how to avoid getting sucked down the rabbit hole of Googling all the various disorders you’re now convinced you have. I just wanted to write one, to say: “hi, I’m with you too, and I think we’ll both make it out OK.” Keep fighting to find the right diagnosis, and if no one else in your life understands why you’re so determined to “be labeled,” just know you are not “crazy.” Labels matter. You matter. We’ll figure this out eventually.

Follow this journey on the author’s blog.

Photo by Katerina Radvanska on Unsplash

Originally published: October 23, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home