Misdiagnosis

When I was first in the hospital after my suicide attempt, my GP at the time put me on medicine for depression. I honestly don’t remember which, because I was only on it for a week.

When I was discharged from the psychiatric unit, I was enrolled in what they refer to as a “partial hospitalization program”.  Essentially it was like psychiatric high school. I went every day from about 7:30 to 3 (after a couple weeks, I was only there until 1pm-insurance sagas etc. for another time).

We had group therapy for a large chunk of the day, and meetings with a psychiatrist, lunch, and a one on one with a therapist.

It was at my first meeting with the psychiatrist that I was given a diagnosis I never expected: bipolar II. 

I had concentration issues, mood swings, depression, and insomnia. I used shopping as a coping mechanism to excess at times- which got lumped into “impulse control”.

In hindsight, at the time I was not good at advocating for myself or explaining what was going on in my head. Over the years I have learned how to do both.

So, in my naive understanding of myself I accepted what the psychiatrist said- what did I know? They were the professional. And it’s not the psychiatrist’s fault either. I know now I didn’t give her much reason to doubt that’s what I was.

So they took me off the anti-depressant and put me on lamictal, and gave me ambien to sleep at night. 

I don’t think I talked to anyone outside of my parents and my godmother about my diagnosis. I was ashamed. How could I not be? Here I was with a diagnosis of Bipolar, something I barely understood- how was anyone else going to understand.

The lamictal didn’t work. It did something, but it didn’t actually fix what was wrong with me. Instead it made me completely numb to everything. Lamictal is a mood stabilizer, also used in the treatment of epilepsy. So while I wasn’t having any mood swings- I wasn’t having much of any other emotion either.

After I left the partial hospitalization program, I had a new psychiatrist that I tried to talk to about my concerns with my diagnosis- and the medication. His response was to add abilify. And while I know it works for so many- it made me horribly sick. I’m not talking the typical initial nausea and stomach issues I usually get when starting a new medication, I couldn’t even think about food without getting ill. It went on for a week. I tried to discuss this with the doctor and he told me to keep taking it for another week or two. I refused. And we went on with my treatment as normal.

This was the first moment I truly advocated for myself as a patient and it opened my eyes. I knew myself, I knew my body. I knew what was working, and what wasn’t. 

It took many years and many different psychiatrists to finally get an accurate diagnosis. After I learned to advocate for myself, and explain my symptoms better (thanks to a wonderful therapist who agreed when I told her I didn’t think I was Bipolar)- the ghost of that initial diagnosis haunted me.

I wanted to be honest, but the moment I said I had been diagnosed with bipolar it felt like they stopped listening. Despite explaining my symptoms in far more detail, most stuck with that diagnosis. 

One even gave me a few worksheets to circle answers on instead of talking to me. One was for depression, one for anxiety, one for ADD, the other for Bipolar. Wanting to be honest, I answered one question “yes” on the Bipolar worksheet- one. And it was the same as one of the questions on the ADD worksheet. Know what she said to me at the end of the visit? “Well I think you might be a little bit bipolar.” That was my first clue this was not someone I wanted to continue to see. I only ended up seeing her three times.

My wife suggested I stop telling new doctors about the past diagnosis. My anxiety flared up at the thought of being “dishonest”. But eventually I came to understand that it wasn’t. It was starting with a clean slate. I could explain what I was feeling better now, and my wife also helped me see and believe that I could stop seeing a psychiatrist if I didn’t feel comfortable with them- that I could simply get up and walk out. It took some convincing but I finally came around to what she was saying.

I just found a doctor I’m completely happy with. She listens, she engages. She’s been working with me since day one on my symptoms, managing my medications. For my part, I’m a much better self-advocate these days. But my current psychiatrist is a match made in heaven. For the first time in a while, I feel like ALL of my symptoms are being addressed. I just started a different medication (Lexapro) after the first she put me on (Zoloft) gave me some pretty gnarly gastrointestinal issues. And this new one has been wonderful. 

And the bonus is that I was able to be honest with her about my past diagnosis (after I initially just described my symptoms- I did follow my wife’s advice in part) and explained why I believed they diagnosed me as such. She didn’t stop listening. She let me go on, and didn’t try to ride the coat tails of the previous diagnosis. 

It’s still an adjustment and monitoring game. It always will be. But I’ve finally found a doctor willing to play that game in full with me. She’s amazing, and I am so thankful to have found her.

Lesson: advocate for yourself. Even if it’s something as simple as “no this medication is making me sick.” I learned this the hard way (though I’ve heard some horror stories that make mine look like a Julie Andrews flick). A good support system is everything though, if weren’t for people in my life insisting they didn’t believe the initial diagnosis either I doubt I would have started to push back against it as much as I did. 

And of course, to my wonderful wife who has been with me every step of the way on the most recent leg of this journey. (More on that at another time too.)

For those wondering: I have depression, GAD (general anxiety disorder), ADD, and a panic disorder which is tied into the GAD. (I also suspect some issues with compulsions, also tied into the anxiety disorder). 

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