Thursday, May 15, 2008

Labels: A Cautionary Tale

Labels damage us. They steal our truth.

Until my diagnosis, I was unique. I was different, and I was proud of that. I forged my own path, discovered my passion, abandoned some of the dearly held beliefs of my upbringing, and set the world on fire. Well...maybe not the whole world, but my little corner was burning pretty darn brightly, thanks.

I considered myself a student of my own mind. I knew myself better than a lot of people twice my age know themselves, and felt that I had achieved a level of comfort with myself and awareness of myself that many people never achieve. I knew that I had highly energetic, productive periods when my sex-drive was through the roof and I needed very little sleep. I knew that I also had darker, more contemplative periods when my energy ebbed, leaving me feeling empty and leaden. I never really thought of this as a problem. It was just the way I was, the way I knew myself to be. The way I was comfortable being. Obviously, my writing drove my moods. If I had a project I was excited about, my mood was expansive. And if I had passion for nothing, then I lost interest in life and depression set in. Curing it involved the search for the thing that would spark my interest and get me writing again. Perfectly normal stuff for me. Writers, after all, are supposed to be a bit screwy, no?

That all changed when I was diagnosed.

When I was labeled "bipolar" I became "bipolar". I did not, at that time, really understand what that meant. My doctor insisted that it meant that my episodes, which had always been fairly far apart--a few years, at least--would become closer and closer together as I grew older, and much more severe. He told me that in order to protect myself and my family from these terrible, uncontrollable moods that I would experience, I would need to be on medication for the rest of my life.

He told me to educate myself. So I read all the books I could get my hands on, and I learned that there was no hope for me. I would, as my doctor had said, have to be on medication for the rest of my life, and even if I took my medication faithfully, I would still suffer from these episodes, although they would hopefully be farther apart and less severe. In addition, it might take years before the correct combination of medications was found. And during those years, I would have to put up with medications that didn't work well, or that had intolerable side effects.

Of course, I cooperated; I was too scared not to. Becoming "stable" became my new goal in life. I became a student of my moods, diligently charting every change, pathologizing every fluctuation, and frequently calling my doctor for medication adjustments.

The promised "stability" didn't happen. The medications didn't help, and in fact they made things worse. I had more episodes in the two years I was on medication than in the six years before my diagnosis. The side effects were intolerable. I was unable to write, hand tremors stopped me from most of my artistic pursuits, my short-term memory was shot...

In those two years, I completely lost myself. I resigned myself to spending the rest of my life overweight, mentally compromised, and in chronic pain...but deep down, I never really accepted it, and part of me was still in there, kicking and screaming and rattling the bars of my chemical cage. I should have listened to myself. I knew my own truth, once...

I talked to my doctor about stopping the medications, or at least lowering the doses to help relieve the side effects. He prophesied Doom and Gloom: "You are an intelligent woman," he said. "You know you will ruin your life if you cut back on your medications."

It took my husband nearly dying for me to realize how out of touch I was with myself. When he had his heart attack, I found myself unable to respond to this life-threatening, life-changing event with anything other than apathy. It was time for a change. It was time to take a break from medication and figure out how much of a problem being "bipolar" really was.

Turns out that it wasn't. (And when they cart me away, raving and delusional, you may all nod sagely and say I told you so.)

It has taken a couple of years, but my writing is slowly coming back, working its way into the corners of my life, and becoming part of what defines me once more. "Bipolar" doesn't define me at all...even if I start experiencing those high energy/low energy periods again, "bipolar" doesn't fit. Maybe it never did.

Labels should be used with extreme caution.

All a label does is take away your own truth and replace it with someone else's.


Gianna said...

The promised "stability" didn't happen. The medications didn't help, and in fact they made things worse. I had more episodes in the two years I was on medication than in the six years before my diagnosis. The side effects were intolerable. I was unable to write, hand tremors stopped me from most of my artistic pursuits, my short-term memory was shot...

this happens to so many people and the tragedy is most people don't realize it because their doctor just keeps insisting it's their disease getting worse...

It's a tragedy.

Jazz said...

Right, that is exactly what my doctor said--"See? I told you the episodes would come more frequently. This is the natural progression of your illness."

Most of us just don't know any better when we get roped into this medication merry-go-round. I thought that reading the books that were available was enough to educate myself. But all those books do is support what the psychiatrists say: meds for life, no hope of recovery.

Bipolar Wellness Writer said...

Dear Jazz,
You're such a talented writer. Sorry to hear you haven't been published.

When my husband had to go to the doctor for his heart--they needed to use a defibrillator for his Arrhythmia--I was so sick my sister-in-law had to take him, and I could barely get up to find out how he felt when he returned home.

And at one point my hand tremors were so bad that the only job I figured I could do was to be a conductor of an orchestra. I couldn't even write a check.


BPD in OKC said...

I found that after getting diagnosed with borderline personality disorder, that I got labeled "borderline." I hate labels, but I think I'd rather be labeled it and accept it than be in denial. Before the diagnosis, I spent so many years just thinking I was crazy, so I pretty much welcomed the diagnosis with open arms. The label just came with it. :(

Jazz said...

Thank-you for the compliment. To be honest, I haven't tried real hard to publish since my diagnosis. I am working on a bipolar book--one that will maybe give people a bit of hope rather than the usual song-and-dance.

Regarding side effects, it always amazes me how much these doctors expect us to put up with the name of "stability."

Jazz said...

I also welcomed my diagnosis at first, because I thought it explained so much that I could not explain. But once I saw what kind of life I was left with after surrendering my brain function to my psychiatrist, I realized that I was going to have to find another way.

(I'm not saying I'm anti-meds, and I believe that if they help a person, they should take them. But I also believe that many of us who just need a little help are being sold the meds-for-life line, and I think it needs to stop.)

Anonymous said...

Hi Jazz,

Interesting blog. I ditto what Gianna said.

Docs say your disease is getting worse instead of the meds precipitating the symptoms.

Jazz said...

Hi, Naturalgal, thanks for stopping by!

I got worse on meds...and I think a lot of people do, but don't understand that is what's happening.

Shiv said...

Thank you for posting this. I am going to see a psychiatrist today (want a psychotherapist but haven't convinced them on that yet) and I have a suspicion they are going to throw the bipolar label at me.
Based on this post and others I've read from other people, I am going to refuse all medication. The success rate seems to be low, and the risks and collatteral damage seems to be very high so I'd rather deal with this in a more behavioural manner.
Again, thank you for posting this.

Jazz said...

Hey, Shiv, don't rule out meds completely...sometimes they do help, and if you're at the end of your rope and feel like you have no other options, there's nothing wrong with giving them a try...the important thing is to go into it with your eyes open, and research the medications so you know exactly what you're getting into.

My feeling on medications is that sometimes people do need them to survive. And sometimes medications do immeasurable harm. I think if your situtation is at the point where it is unbearable, medication is certainly an option. But I think, too, that a lot of medication is prescribed where, perhaps, therapy would be a whole lot more helpful.

I don't think that you should accept the medication-for-life sentence as easily as I did. You should question. Hope isn't something we hear a lot about in connection with the mental health system, but it's out there.

Good luck with your visit!

Anonymous said...

I get what you're saying about the shift in how you see yourself. I also welcomed the label at first. I felt like it explained so much, and initially the meds did seem to help, so I didn't notice how much I was losing.

Shiv--tread cautiously. I don't know your situation, but in general, all a psychiatrist has to offer you is a diagnosis and meds, so think carefully about why you are going if you are planning to refuse meds anyway. Psychiatric approaches certainly can help some (BPD in OKC above) but so many of the costs aren't obvious up front. If the doctor writes any diagnosis on your record, particularly bipolar, you will have difficulty purchasing private health and life insurance for the rest of your life, especially if you also refuse medications and are thus also labeled "noncompliant."

By all means get the help you need, but the mainstream tools available are extremely limited and come with a lot of initially invisible collateral cost.

Jazz said...

Well put, Tilting-at-Windmills!

Coco said...

Hi Jazz, new here. You blog looks really interesting to me. I seem to be coming to some of the same conclusions that you talk about in regards to meds. Great post.

Jazz said...

Thanks for stopping by, Coco! Hope to see you again.