A Diagnostic Swamp – Defeated

The question of my diagnosis (at least, my particular bipolar diagnosis) has been something that has been under discussion for a long time. A lot of what I wrote in the early stages of this blog was centered around attempting to discern my true type, and if there was, in fact, one for me to fall into. After a time I gave up and forced myself to stop thinking about it because trying to recall episodes and memories was a tad too overwhelming to allow me look at things objectively on my own.

This issue suddenly came back up on Monday when I scheduled an appointment with a local psychiatric medication research team. My intention was to talk with them about what they do and how I could potentially fit into the research they are conducting around bipolar disorder, but upon making my appointment I was told that there would be a psychiatric evaluation and full physical to determine my eligibility for any of the current studies at the time of my appointment.

I was immediately filled with dread, something about the words psychological evaluation always send a jab straight to my stomach that spreads up through my chest. All at once I was terrified that the answer to the question I had been asking myself for years, my final bipolar diagnosis, would be revealed to me. Sure, it could mean a sort of closure or silencing of the nagging caused by not really knowing, but it could also mean having to face a series of specific words. What if those words felt defining? What if all of the research I’ve done has led me in the wrong direction -what if they weren’t what I was expecting?

Already nervous on Tuesday when I arrived at my appointment, what little enthusiasm I had vanished the instant my evaluating psychologist walked in the door. It was a man, and though my usual psychiatrist is a man, I have spent enough time with him that I am able to trust him at this point. Most men, however, I have zero trust for by default, something compounded exponentially when they work in the medical field. My anxiety gets too high and I have trouble being open with them when I first meet them, and I instantly took this as bad news for my psychological evaluation.

To my delight, however, he turned out to be quite the sarcastic oddball, which promptly brought him from intimidating straight down to nerd-level where I knew he wasn’t a threat. My body relaxed, the nervous jitters slowed, and I said, “just a minute, I brought some visual aids!

I showed him the color-band chart and as I hoped, he was delighted.

Right away he asked if I was type I or type II.

“I’m not sure, to be honest,” I said. When he began describing the difference to me I could only shake my head. “No,” I said, “I understand the types. The trouble is that this is tricky.” I didn’t want to rant about how different doctors see different things in me, something like a kaleidoscope. How I don’t know how to best get the truth across, or how there are periods and episodes where I genuinely can’t remember how much time had passed, or how I felt when they did.

We spent an hour while he deduced. He asked me questions about past manic experiences and lit up like a little boy under a Christmas tree when I told him about running away from home to live in the woods. About hiking for 8 miles a day because it was all I could do to keep from being engulfed by the energy. About feeling like a werewolf (yes, I had a psychotic manic episode where I thought I was a werewolf).

To these things he replied, “you have fun ones.

“You’d think that, wouldn’t you,” I said. “And actually,” I added, “they were all pretty fun at the time. Less fun, though, after.”

This is where the trouble always comes from in these situations, because the duration of these episodes vary. Many of them, the most intense portions may last for a couple days, but as I mentioned, there are many areas of my memory which are blank, and many times (like when I lived in Colorado) where time is not accounted for.

That, and the odd 2nd hospitalization where I excitedly convinced a woman to admit me to the psychiatric ward of the Boulder Community Hospital, and then after several hours I excitedly convinced her to let me leave again. My recollection of this situation and the lack of my recollection of the surrounding period of time leads me to believe that I was in the midst of either a mixed or manic episode (though I expect manic based on the manner in which I entered and exited the hospital), recognized it, and tried to seek help -only to be greatly un-amused once I entered the hospital, so I left.

Like I said, it is tricky. There are wild cards, and I don’t know that I remember things right, or at all.

“Bipolar type I, most recent episode mixed,” he concluded, scribbled it on his sheet, and moved on.

I left the facility feeling overwhelmed. Conflicted. Type 1? Are you sure? But he just met me, could that be right?

I mean, I was glad for an answer, but was this the right answer? After all, I had also once been given a bipolar type II diagnosis (many years ago), and another time a bipolar NOS diagnosis (a bit later). I only discovered these by reading the old files from prior hospitalizations. Nether of the doctors had spoken to me about why they diagnosed those things, or asked me questions about what I had been feeling. Their diagnoses were based largely on the feedback of others, while I was completely unaware of both the diagnoses and what bipolar disorder was at all.

Still, I had honestly expected his conclusion to confirm one of those two diagnoses, and I most expected NOS.

This whizzed through my head as I kept second-guessing what this man had concluded. My mistrust grew again. On top of that, I didn’t know if I wanted to be in a research study, especially since the study is for people with bipolar type I. What if I’m not? What if that is what I am today, will that still be me tomorrow?

Honestly, I was so confused that by Wednesday morning I couldn’t write a blog post. I had too much to say with no answers, or at least, no answers that I trusted.

(Paranoia, my psychotic symptom of choice, can you tell?)

I am extremely lucky that I had an appointment with my usual psychiatrist on Thursday or the whole thing might have gotten the better of me. I concluded I was going to walk into his office, tell him I wanted to take a break from trying new medications for a bit (at least for a month to give myself a rest after the trileptal fiasco), ask his opinion about the idea of me participating in a research trial, and to politely request he clarify the diagnostic swamp I had suddenly found myself in. After all, he had been seeing me for over a year, so if anyone would be able to get a good sense for my symptoms to make a diagnosis, he could.

You might wonder why I haven’t approached him sooner about this… and in honesty, I might have. My memory doesn’t work much anymore, so it is possible we had this conversation already. And if not, it would be because of

a) the aloofness of psychiatrists in general
b) my overwhelming anxiety about asking
c) my lack of trust in medical professionals

It would be fair to say this mess is of my own making, but even so, when I walked into the waiting room Thursday my anxiety was fast approaching panic attack level. For the first time I found myself feeling grateful he was running late, and spent the extra 15 minutes pulling myself back down into a relatively calm, only slightly-shaky state. I still had to clear my throat a few times too many before getting any words out when I entered his office, but the enormity of his windows (which I always find baffling) helped stun me into conversation.

First, he suggested I take a break from trying anything new.

He read my mind, I thought, this is clearly a good sign. We are totally on the same page!

So I asked how he felt about me doing a research study.

“You have tried SO many medications, I think that is a great idea,” he reassured me before telling me he has a high opinion of the man who runs the research facility I had visited Tuesday. “It would undoubtedly give you access to medications I can’t provide to you, and I heard they are researching several promising ones right now.”

Great! Two for two!

“So,” I went in for the final question, letting it out all in one breath, “I met with someone there and I just hoped you could clarify something for me because he gave me a bipolar type I diagnosis. I was wondering, since I have also seen possibilities for type II or NOS, if you would agree type I would be accurate for me.”

He looked stunned. I’ll never forget it, he actually sat back in his chair like something knocked him there, and then he blinked as if coming out of a stupor.

(And this is the part where I am pretty sure we must have had the conversation before, because he looked genuinely surprised…)

“I have considered you type I since the first day I started treating you,” he said, “and I am genuinely sorry if we haven’t talked about it before now. But yes, I agree with him.”

This time I felt relief.

By this point I had stopped caring what the diagnosis is, as long as I could get a clear answer from anyone. I feel like I’ve gotten the run-around for a long time by many doctors I’ve seen, and it did appear as if he was genuinely either concerned (because we’d already had this conversation) or sorry (because we hadn’t), which either way made me feel much better about the situation.

He said that it is the nature of my manic moments (the fact that they are intense and psychotic) that has led him to this diagnosis, and when I look back on my most recent episodes, their length may be as short as they have been because when any whisper of mania comes on I quickly bombard it with intense antipsychotics and forced sleep. It is likely at this point that if left unattended (as my episodes were previously) they would be as severe as they were in the past, possibly even more so.

So, that makes me two for two this week.

And that, would be just a portion of my intense week in a nutshell, as I find myself inducted into the bipolar type I club.

I don’t know that this is where I ever expected to find myself, but for me a diagnosis is just a tag, just a business card I can pass on when someone needs to know more in a hurry. It doesn’t make things feel any less complicated, and it doesn’t change the fact that none of the medications I’ve tried have worked out. What it does feel like is validation that someone has recognized that I have a genuinely hard time living my life, and acts as something of a reminder that the things I perceive to be my failures are sometimes outside of my control.

 

 

It has been 9 years, 4 months, 3 weeks, and a pocket full of change since my first hospitalization. It is almost funny that I didn’t wind up with this fortune cookie until now.

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8 responses to “A Diagnostic Swamp – Defeated

  1. As always, I love your descriptions! I am midst psych eval myself, and I am glad to know I’m not the only one who gets the jittery, paranoid, nervousness about these types of things.

    I am so happy you have gotten an answer (and now that it is on your blog, you will have it even if you forget it)! I feel getting those definite words is less defining and more like having somewhere to aim your blows.

    I am really looking forward to hearing more about the research study. With your tracking and charting, you sound like a great candidate!

    Best wishes!

    • Sarah @ bi[polar] curious

      Thank you! I am also looking forward to the research study and discussing it a bit since I haven’t read much on how the process works from others. I am double excited to have a whole new reason to mood-track my brains out!

  2. My last psychotic depressive episode had me thinking I was a ghost, who had just never realized before I was dead. Or possibly an alien. I definitely had discovered I was no longer human & possibly didn’t exist at all.

    I’m glad you’ve finally gotten some answers & hope things go well for you in the study.

    • Sarah @ bi[polar] curious

      What I find most funny about these episodes is that I have no way to describe exactly how it felt to be a werewolf or how I knew I was (I’ve had rather ghostly feeling episodes as well, I call them “wispy”) without sounding like I am making some kind of terrible joke. Thank God for a sense of humor…

      Thanks!

  3. Welcome to the BP I Club. 🙂 I had my diagnosis changed from II to I as well and it was such a relief, because it brought all of the psychosis into focus and gave them a reason for happening.

    Kudos for volunteering to participate in the research study! I’m very curious to see what avenues they are now investigating with BP I treatments. Will you be able to keep us informed?

    • Sarah @ bi[polar] curious

      To the best of my knowledge I will be able to write about the study as it takes place, but I will still need to clarify some things (like what I can say and when) before the study begins. At this point I am looking at probably three weeks out, but I absolutely want to write about how the process works, etc, and I expect that once the study ends I am able to reveal the whole shebang if I am not able to earlier.

      Thanks!

  4. Hurray for getting just a little more certainty, eh?

    As far as I know, I’m BP II, but no one has really talked with me about it at any point. Only one psych ever listened long enough to really make that judgment, but never gave me the diagnosis.

    • Absolutely, and I know what you mean… I was pretty much in the same boat. Even though I’d reached the point where I didn’t care much any more, I am glad I’ve got something solid now to refer to when speaking with other doctors, at least!

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