I Almost Took My Life Because I Was Misdiagnosed and Not Getting the Right Kind of Treatment; or, Sit Back and Get Comfy, ‘Cause This One is Kinda Long…

I Almost Took My Life Because I Was Misdiagnosed and Not Getting the Right Kind of Treatment; or, Sit Back and Get Comfy, ‘Cause This One is Kinda Long…

Diagnoses are very important. If you have any doubts about this, all I can say is:

YOU BET YOUR ASS THEY ARE!

You know what’s even more important? The correct diagnosis. That determines what your options are for treatment, managing symptoms, plugging into community resources, etc.

But when you allow your diagnos(es) to become your identity and rule your thoughts and actions, then it’s less like a diagnosis and more like a label you slap on yourself. The limitations of your condition snap to attention, front and center.

Ever-vigilant, your brain tries like hell to make sense of a new diagnosis without turning it into a catastrophe – which is very hard for those of us who suffer from low self-esteem and self-worth, a lack of confidence, and little hope for a future.

I haven’t looked up the definitions of label and diagnosis lately, but to me, there is a very real and consequential difference.

Labels tend to be judgments we place on ourselves (or others) to try and explain our behavior: “God, I must be quite the catch [she said to herself, with plenty of snark]. When am I going to find the right guy (or girl)? I’m such a loser!”

I think it’s obvious that these are subjective, biased judgments. In fact, there’s not a single fact in that entire statement.

A diagnosis, made by the appropriate medical personnel under proper conditions, is objective. The DSM-V, the “bible” of mental health and mental illnesses (click on “Patients and Families for some good info), contains entries for every mental health disorder, including their symptoms, criteria for diagnosis, etc.

Getting a mental health diagnosis seems like it should be simple, then. Just follow the guidelines and criteria in the book.

Ah, but we’re talking about human behavior here. There are mitigating factors.

The doctor (hopefully a competent, up-to-date, interested, dedicated person) has to use his or her book knowledge, personal and professional experiences, anecdotal evidence, and extrapolate from other areas. It’s complicated, trust me. A good psychiatrist will assess your whole being – not just ask you the assessment questions on the PHQ-9.

Getting a correct, accurate diagnosis and reassessing it at appropriate intervals is paramount in anyone’s recovery, from anything.

Why?

Because until you know what’s wrong, there is no way to treat it – in fact, there is “nothing to treat”. You’re stuck suffering for what could be years or decades.

It’s more common than you think.

LET ME TELL YOU A STORY

Don’t worry, it’s a short one.

Back in the mid 90’s, my wife, CeAnne, had some strange physical symptoms going on. Her legs went numb a couple times, her hands were numb, she had a lot of dizziness/lightheadedness, and – as she puts it – “I’m the clumsiest person you could ever meet. I can trip going up the stairs and going down the stairs – in the same trip!”

One day at work, she was being treated by a rolfer (a soft-tissue massage therapist) for her numb-hands issue, thinking it was carpal tunnel. When they started talking about CeAnne’s conglomeration of symptoms, the rolfer got a serious look on her face and suggested CeAnne see a neurologist and ask if she might have Multiple Sclerosis.

CeAnne was mighty surprised, of course, but that seed of doubt turned into an appointment with a doctor. One phone call later, she was told that there were “wide-spread changes” in her brain and that she needed to see a neurologist.

In the end, it turned out that she does, indeed, have MS. She was diagnosed on August 11, 1998, about five to seven years after the initial symptoms appeared.

And listen to this one: Before pursuing the possibility of having MS, she went to one doctor – a man, which is relevant here – for problems with vertigo. You will never, ever, in a million years guess what conclusion he came to…

He actually told her that she was retaining water in her head from her period.

No, really.

And the kicker? HE HAD MS HIMSELF!!

And so many people still don’t believe that women are often not taken seriously in any arena, much less regarding our own health.

This blowing-off of CeAnne’s medical concerns meant that she had to wait that much longer for a diagnosis and, therefore, treatment.

That is shameful, irresponsible, and completely unacceptable.

“YOU THINK I’M BIPOLAR? REALLY?? HUH…” aka, HOW TO SURVIVE BEING TREATED FOR THE WRONG MENTAL ILLNESS FOR OVER A DOZEN YEARS AND LIVE TO TALK ABOUT IT

I finally went to my first pdoc at the end of 2001, after suffering through a really deep depression for about a year.

I’ve mentioned in other posts that it should have been quite obvious that I was depressed; however, for reasons I will never understand, Dr. Khan diagnosed me with Bipolar Type II.

You know that old joke? “This is going on your permanent record, hahaha!”

Well, it did.

Needless to say, I was pretty surprised. No, actually, I was stunned. I had no idea there even was such a thing as Bipolar “Type II” (most people don’t), so I did as much research into it as I could. There was less info on the internet at that time, so I had to do a little digging. What I found was confusing and general, and gave me even less confidence in this diagnosis.

I never really did find a definition that I could really comprehend (much less one I could relate to), and just could not understand the difference between Type I (which is what most people think of when they hear “bipolar”) and Type II.

But, since that was my diagnosis, that’s what I was treated for – not depression. For a number of years, I was on three different kinds of psych meds: Typically, an anti-depressant, an antipsychotic, and a mood stabilizer.

Between 2001 and 2015, when I was saved by Dr. Nelson, I had easily tried more than twenty different psych meds, in various combinations and dosages. None of them did much of anything for me.

That is fourteen fucking years! Fourteen years wasting time (and my life) being treated for a mental illness I did not actually have.

I’ll say it now: It’s an absolute fucking miracle I have lived this long.

I wonder – if I had died by suicide during those fourteen years, could my wife or my family of origin or the awesome Attorney General of Minnesota, Lori Swanson, have sued the doctors and insurance companies that just went along with the original, incorrect diagnosis and not done their own due diligence?

TRUSTING (OR NOT TRUSTING) THE STATUS QUO

When I moved from California to Minnesota (I know, I know – why??) in 2003, I had no job, no money, no savings, no prospects, and no health insurance. I had just gotten divorced. My brother, Chris, and his wife, Debra, let me stay with them rent-free for over a year.

I had to pay $1500 a month for my meds on my credit card for more than six months (which contributed to my need to file for bankruptcy in 2010). Yeah, psych meds are ridiculously and prohibitively expensive.

And I had to make no less than 19 phone calls to find a pdoc who would see me. In the ensuing years, I tried another three psychiatrists (plus more than ten during my hospitalizations).

Did any of them do a real assessment on me? Did they spend an hour or two with me, looking over my history, asking me questions – making sure my diagnosis of Bipolar II was correct?

Um, no. Not one of them did this. My experience is that when you walk into a new shrink’s office and say you’ve been diagnosed with X, they just go with it. They take the word of the previous shrink. Sure, they are overworked, and they try to fit in as many patients as possible in one day, so maybe they just don’t have the time to be thorough. But that is to the patients’ detriment. The shrinks’, too, in the end.

I’m not a very big fan of hanging onto the status quo just for simplicity’s sake.

I have long gotten over [most of] my hostility toward that part of “the system”, although, obviously, it still sneaks in there a little. Which reminds me, have I ever told you about the time I had to wait 36 hours in the psych ER (“padded room”/“holding tank”) before I was able to get any treatment? Nurse Ratched was on duty for part of that time, and holy shit did she have it out for me!

OMG, this post is already huge – I’ll have to tell you all about it some other time.

Back to the topic at hand.

FRUSTRATION AND QUESTIONS. LOTS OF QUESTIONS.

Of course, I can’t predict what exactly would have become of my life had I been properly diagnosed in the first place. Maybe my recovery would have been jumpstarted a decade or so earlier. Maybe I wouldn’t have had to be hospitalized over a dozen times.

Maybe I wouldn’t have lost my reasonably-productive, sometimes-fulfilling life to a “disability” over twelve years ago. Maybe I would have been able to continue working. And get my Ph.D., and who knows where that might have taken me?

The combination of possibilities is was, I think, endless.

Now, I try not to play the game called “What if…”, because it’s nothing but speculation – there are no answers to that question. But I do slip into it once in a while. Hey, I’m only human.

I mean, can you even comprehend the enormity of how different my life *could* have been had I received an accurate diagnosis and received the right kind of treatment starting in 2001 instead of 2015?

One thing I can say for sure is that I would have never had to experience the hell of ECT and the subsequent cognitive deficiencies I still suffer from, which keep me from being able to work, feeling productive, having pride in myself, supporting myself and my family, keeping me engaged and busy and present…

Not having to go through ECT would have changed every. single. aspect. of my life over the last twelve years.

In other words, the entire trajectory of my life would have changed.

*insert big, fat sigh here*

*shrug*

Well, it is what it is, yes? I don’t dwell on it very often, but every once in a while I can’t help but wonder: “What if…”

It’s very frustrating.

And futile.

MY SAVIOR, DR. NELSON

In 2015, a particularly horrible year for me, I was in a psych unit and roughly five seconds away from doing ECT again, even though I had been very anti-ECT since my experience with it ten years earlier. (Oh, don’t worry – there will be posts about that coming up. I have a ton to say about ECT!)

But I was so desperate.

While I was locked up, CeAnne did some internet research of her own and discovered TMS as an alternative. I’ll admit I hemmed and hawed. I’d never heard of it, and what if it didn’t work?

But I listened to her and to my gut and agreed to try it instead of doing ECT again. I soon had an appointment for an actual evaluation with Dr. Nelson, who, at the time, worked at a clinic that was part of the University of Minnesota.

He spent two entire hours with both of us. We had a very educational, enlightening conversation. He asked us questions about my symptoms, our relationship, my past treatment, my complete failure to respond to meds, my (negative) life-changing experience with ECT, and much more.

At the end of the two hours, he concluded that I have Major Depressive Disorder (MDD), not Bipolar disorder.

Well, I’ll be a monkey’s uncle – someone listened and gave a shit! To this guy, I was more than a ten-minute appointment every three months to get refills of meds that weren’t even working.

Because of that change in diagnosis, I was eligible for the newer and mostly-unknown treatment I keep shouting about, TMS. And believe me – it saved my fucking life. More than once. I just wish the word would get out more. Most mental health professionals (including psychiatrists themselves) have never even heard of it.

I will be grateful to CeAnne, Dr. Nelson, Kris the nurse, everyone at MINCEP, and now everyone at my new clinic, until the end of time.

DIAGNOSIS OR NO DIAGNOSIS, IT’S ALWAYS ONE DAY AT A TIME

So, I keep going. Some days, I can hardly function. The house stays a mess. No laundry gets done. I don’t shower, brush my teeth, or get dressed. I don’t even walk out the front door.

But more and more now, since starting another course of TMS, I feel okay enough to actually get a few things done. I do my best to follow my treatment plan and my safety plan (which reminds me, I need to update that). I share how I’m feeling with CeAnne and maybe someone else. I practice my DBT skills. I go to my appointments.

Regardless of what my diagnoses are, I have to work at self-care and listen to my “wise mind” every day. Managing a mental illness (or two or three) is hard emotional, mental, and yes, physical work.

Trust me on that.

One day at a time. One hour at a time. Five minutes at a time.

Whatever it takes.

Please share the love! 🙂

2 thoughts on “I Almost Took My Life Because I Was Misdiagnosed and Not Getting the Right Kind of Treatment; or, Sit Back and Get Comfy, ‘Cause This One is Kinda Long…

  1. My doctor wanted to change my diagnosis from MDD to BiPolar because I smiled one day. It’s odd when the patient has to fight the doctor regarding proper diagnosis.

    1. I know, right? Some docs are old-school/inflexible/think they’re going “by the book”, but there are some good ones out there. I wish I had gotten a second opinion many years ago. But, like I said, it is what it is. Once I got on track, I started with the TMS, and it brought me back to life. It made my life worth living again. I hope you’ve found someone who actually listens to you so they can help you. 🙂

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