I have spent a ridiculously long time trying to get my sh*t together. That’s just the honest truth. A big part of that has to do with the fact that I was misdiagnosed as bipolar, which resulted in a six-year-long goose chase, trying medications that were never actually going to work.
It took a savvy psychiatrist, an incredibly patient therapist, two nightmarish hospitalizations, and a battery of psychotropic medications to finally sort out the problem.
I wasn’t bipolar at all. I had obsessive-compulsive disorder and complex PTSD. And as such, we needed a whole different approach.
I tried antidepressants for the first time. It was like the sun parting through the clouds, with a chorus of angelic voices being heard in the distance (this sounds dramatic, but seriously, it was a huge relief). I started trauma-informed therapy and I learned more about OCD (“pure obsessional” in particular, the kind that I struggle with).
Slowly but surely, something shifted. I started feeling calm. I started feeling… happy? And as I moved away from “survival mode” — really, the only headspace I’d ever known — I was able to ask myself questions I’d never thought to ask.
What makes me feel joy? Who do I want to spend my time with? What goals do I have for myself and my personal growth? What do I enjoy doing, and how do I make more time for it? What kind of future do I want for myself?
These were trains of thought that I’d never explored before. A lot of my previous ruminations focused on keeping myself safe, creating more stability, coping with mental illness, hanging onto my job while deeply depressed, surviving until my next appointment. It was how to get through the day, more or less.
But now? There’s so much more space — in my brain and in my life — to start exploring what makes life worth living.
And that’s just it. That’s what many people don’t understand about mental illness. You can’t hold on for a brighter future you’ve never envisioned and are incapable of imagining. You can’t create happiness out of thin air, when you lack the resources and space to pursue it. When you are trying to survive for another 24 hours, that struggle eclipses everything else.
Imagine living with this for most of your life. How, then, are you supposed to envision — much less understand — something that you’ve never truly experienced or had?
Feeling genuine happiness and safety for the first time feels like waking up from a very bad dream. I rebound from disappoint and sadness quickly. I’m calm in the face of stress and conflict. I’m optimistic and energetic, which is a strange thing to say, because those aren’t words I would’ve ever associated with myself.
And that’s just it: I think some people have the impression that once a mentally ill person seeks out help, it’s only a matter of time before things get better.
But that’s not always true. Even in the best case scenario, for someone like me who was compliant and persistent — and whose care was accessible — it took years before we understood the complexity of what I was dealing with and how to treat it.
I’m left wondering if this is how I was supposed to feel all along, and how many years that misdiagnosis robbed me of. I’m not one to dwell on that sort of thing, but it highlights a really terrible reality for some people when they’re navigating psychiatry — sometimes, one wrong diagnosis on our chart can send us down the wrong path for years.
In my case, a psychiatrist I saw for fifteen minutes when I was 18 years old drastically impacted the next decade of my life. A psychiatrist who, by the way, said I was too young (and my grades in school were too good) to need her help, and accused me of exaggerating my pain just to get medication.
She put “bipolar” in my file, until a new psychiatrist six years later looked at the many medications I was on with little progress and said to me, “Something isn’t right.”
I’m grateful to be truly well and invested in my life for the first time. I’m also incredibly sad for the many folks that don’t receive the care they need and, as a result, spend years barking up the wrong tree and suffering from totally preventable crises.
It took one psychiatric hospitalization to flag for my clinicians that something wasn’t working, and yet another hospitalization months later to safely pull me off of the many (completely wrong) medications that I was on. Meds that turned out to be not only very powerful drugs, but completely unnecessary ones.
I’m now building a life for myself that makes me incredibly happy, while grieving the time that it took to get here.
And that’s… well, how it goes sometimes. My mental health journey has taught me so much about my own resilience, and I cherish this happiness in a way that I wouldn’t otherwise if it came easily to me. Just the same, it’s a sobering reminder of the consequences when someone gets it wrong.
It took eight years total to finally get the proper care for my mental health.
So what have I learned? A few things. For one, I’ve learned to question my clinicians again, and again, and again. At the risk of being annoying, I’ve found that being more active in my care has led to better outcomes. I’ve learned how to advocate for myself and how to fire a clinician, too. (I talk a little more about these things in this blog.)
I’ve also learned what kind of therapy works best for me, and I’m a lot less bashful about letting a therapist know if and when something isn’t helping me (and just as importantly, when something is helping!).
It’s upsetting that we have to work so hard to get the care we deserve. But it can also be empowering, in a way, when we realize that we aren’t entirely helpless.
I wish someone had told me eight years ago that I was allowed to reject any diagnosis, any clinician, and any kind of treatment that didn’t feel right. But now that I know, I’m finally getting what I need.
So if no one has told you this before, I’m happy to be the first: You deserve the best possible care. By any means possible. Seriously.
Appreciate the blog? Please consider becoming a patron! A dollar a month might seem small, but when folks chip in, it really helps.
Need a therapist? If you follow this nifty link, you can get $50 off your first month of therapy with Talkspace. ¯\_(ツ)_/¯ Read more about online therapy with Talkspace here, where I offer my unbiased review.
“Imagine living with this for most of your life. How, then, are you supposed to envision — much less understand — something that you’ve never truly experienced or had?” This gets to something critical. I think that a lot of psychiatrists, therapists, and well meaning friends and family get caught in not understanding that they are “trying to explain the color Red to a blind person.”
And, I agree, from the other side of the desk, that patients/clients need to be able to tell their treatment providers when something is not working, and be heard when they do.
I’m glad you are feeling so much better.
LikeLiked by 2 people
Reblogged this on cabbagesandkings524 and commented:
Sam writes on the price of misdiagnosis and the relief of the right one.
“In my case, a psychiatrist I saw for fifteen minutes when I was 18 years old drastically impacted the next decade of my life. A psychiatrist who, by the way, said I was too young (and my grades in school were too good) to need her help, and accused me of exaggerating my pain just to get medication.”
How could a trained psychiatrist possibly say that an 18-year-old is too young or too smart to need professional help?? I’ve been in and out of therapy since elementary school, and my grades were always good. That psych doesn’t deserve to have a license.
After trying three different meds to treat my depression, two of which didn’t help and one of which caused a grand mal seizure that landed me in the emergency room, I’m not willing to get back on that merry-go-round yet. But I’m glad that you’ve found treatment that works for you.
You might be AMAZED at some of the things that trained psychiatrists believe.
Your first-hand experience is very powerful. Thank you for explaining that therapy requires teamwork between the client and the therapist. Mental health issues are so complex and incompletely understood that expecting providers to figure them out with consistent accuracy is expecting too much. On top of that, there are many incompetent professionals. I don’t think we’ll ever have simple diagnostic tests, so mental health treatment will always be a combination of science and art. I’m glad you have been persistent, self-aware, and a good writer.
I have BPD and c-PTSD, thank you so much for writing this. I was also misdiagnosed as bipolar years ago, and just as I was beginning to gain an understanding of how to cope with a correct diagnosis, I lost my insurance and therapist… It’s a constant battle, just one hurdle after another.
I have Pure-O too.
I was misdiagnosed with biopolar disorder and borderline personality disorder. I was a wreck from age 18-25 due to the inefficient meds and treatment I received. Then from 25-36 I was med free. Only this year was I able to admit to myself that I was suffering from depression and started an anti depressant. It definitely felt like as you described, with the sun parting through the clouds! And thank you for sharing your story. It is so helpful to hear someone else’s experiences in this.
Wow. This is really eye-opening. Thanks so much for sharing your story. I’m sure more people diagnosed with bipolar should read this article. There could be a lot more misdiagnosed people in the world … sharing!
LikeLiked by 1 person
This seriously is almost exactly what I’m experiencing right now. i was diagnosed with Bipolar 1 7 years ago.(traumatic manic episode induced by medication landed me in the hospital in 2012) I was then seeing a phd psych last month and he said he saw no evidence of it–that I just have anxiety, depression, and cptsd. I’m also seeing another phd psychologist (the other one was to get a referral letter) and he told me that bipolar disorder is one of the most commonly diagnosed illnesses. When I told him more of my story—after I was diagnosed in the hospital I was told that i would need to be dependent the rest of my life, have a legal guardian, that i would never graduate collage, and that I should go on disability(not that there is anything wrong with that, im a strong advocate for people to go on disability)—I was only 24 years old at the time. I eventaullly graduated college, but the point is like what you were saying in this post—i had spent so many years trying to treat the wrong illnesses. I feel so shocked, liberated, and confused right now about it because in many ways my diagnosis with bipolar 1 disorder had become a part of my identity(i know that illness doesn’t equal identity, but let me explain) what I mean by that is that so much of my life revolved around managing that illness—bipolar disorder isn’t the kind of illness you can just forget about, it impacts every part of your life, always having to manage and be mindful of mood shifts etc.
Anyway, it feels really good to read about another transmans experience like this.
It’s helped me articulate how I’m feeling right now—grieving those years.
I’m trying to let go of guilt. Just because I was misdiagnosed doesn’t mean I wasn’t sick all those years ago. I was still struggling because of cptsd and I was not treating it.
I do feel however that a wall has fallen down and I can see the horizon ahead for the first time in my life.
good luck on your journey man
LikeLiked by 1 person
Thank you so much for sharing! This happened to me! Well, not as extreme. I was a little older but misdiagnosed with bipolar type 2, even in reality I was dealing with ADHD and PTSD.
The bipolar meds just messed me up. I took myself off them, and eventually got help for my adhd and things are improving.
LikeLiked by 1 person
I was diagnosed with bipolar disorder when I was a teen; I cannot specifically identify how. But all I know was ADHD became ODD to bipolar disorder. After developing obsessive thinking and intrusive thoughts that could be mild to putting me into a mental prison which made me feel dissociated from the world. I researched and got ahold of all my mental health records that were not destroyed due to privacy laws. Nowhere in the records was my childhood abuse and exposure to sexual content (not abuse). Therefore I started to wonder if I truly had bipolar. As my symptoms we’re primarily anxious and neurotic in nature. I’m told they can be part of bipolar, I’m also told they can exist together. I am on lamictal and clonazepam daily, no caffeine, alcohol or drugs. But I’m plagued with reoccurring thoughts and obsessions. I mentally compulse I believe. Mental checking, avoidance, reassurance, self loathing, guilt, internet scouring. Etc. My thoughts scare me and make me feel unsafe around my son and wife (though the reality in my wife’s eyes the opposite in every way). How can you find out for sure if someone is just OCD (in my case likely pure-o based on changing themes) or bipolar.
Thank you Sam Dylan Finch and everyone else who has commented on this subject. I am very curious to know; those of you misdiagnosed with bipolar disorder… what was the defining “symptom” that lead to that erroneous diagnosis? Most psychiatrists look for at least one hypomanic or full blown manic episode in order to make the diagnosis between Bipolar Type 2 and Bipolar Type 1. Hypomania and mania are quite distinct in their presentation so I wonder how so many docs have misdiagnosed patients with c-ptsd. Any thoughts?
In short: My ADHD symptoms, which included hyperactivity, were misdiagnosed as hypomania. My intrusive thoughts from OCD were misunderstood to be psychosis, thus mania.
They really aren’t quite so distinct, particularly if you’re not actually spending a lot of time with a patient.
I too was misdiagnosed with bipolar 2. I have come off the unneeded medications Vraylar Lamotrigine and Ativan. I am now on celexa and have a great therapist. Slowly I am getting better but still having some withdrawal symptoms ( it has only been several months off). Looking for others that have gone through this and are doing better. Thank you for sharing
LikeLiked by 1 person
I’m glad others are asking questions about psych assumptions. Hey:Life is hard. We get anxious. We get traumatized. And then we get…. misdiagnosed.
My sister-in-law is now satisfied that my brother’s “inherited condition,” Bipolar I (plus a massive raft of other strings of letters) is at last to blame for their troubled years together (35 yrs of marriage, we are all more or less the same age, late 50’s). My brother is now doing the hospital ER revolving-door thing when the meds messed him up–how come suicidal ideation is treated with meds that make you suicidal? She is thrilled to call his problems inherited, i.e, it’s OUR family that wrecked her life and probably we are all poisonous “carriers” of his awful condition/s. She calls it his “brain disease” and says that he destroyed their kids’ childhood with his bad behavior. Also, apparently, with our family’s shitty genetics. She’s off the hook!
Fact is, my brother married a very religious gal who popped out 5 kids, starting before my brother could even get a career on track (not even out of college)–she’s a good Catholic girl who offered sex but no birth control–or date around. I have watched him freak out over this for three decades. He hasn’t had a life.
What’s more, we 4 kids had a traumatic, abusive childhood. I finally got treated for PTSD 5 yrs ago after manifesting symptoms virtually identical to his and the therapist even warned me, “You could easily have been dx’ed w/ Bipolar, ADHD, anxiety disorder, major depression, etc., etc.” (I was a mess….Just ask me about obsessive thoughts. I faced a dark beast I called The Wave of Dread. I was sleepwalking with suicidal nightmares. Anxiety is an understatement for my daily mentality.) A traumatic childhood bites you in the butt later in life. If you don’t treat that, you can fool with the rest forever and not get anywhere. PTSD treatment changed my life (yes, I can relate to the sensation of lights turning on brightly!) and now I can peel away the other layers. For me, that means: Talk, no drugs. Personal choice.
But now my lucky brother is being treated with a slew of meds making him essentially disabled but, thank goodness, now we know he’s the unlucky victim of a family disease complex (haven’t seen it in any of nearly 3 dozen extended family members, mind you; strange genetics there). No treatment for PTSD needed; we’ve got drugs. No examining the truth of an unhappy marriage and abusive childhood; his “genes” are the problem.
Good to know. Buy stock in Big Pharma. Also: Hospital corporations.
PS: LIFE IS F***ING TRAUMATIZING. Forgive yourself for “reacting as a normal person to an abnormal situation” which of course looks like you’re the abnormal one…. Maybe you’re just seeing the truth. I can actually talk w/ my parents now about what how messed-up our family was decades ago. They’re really cool old people (at one time, though, truly amateur, uninformed parents of young kids). Truth heals.