Love, Labels and Lies

"Hi. My name is Susan and I have been diagnosed as Bipolar 1, ultra rapid cycler. I've been on over 50 different med cocktails, seen over 30 psychiatrists, and had ECT. On a scale of one to ten, I am feeling about a five tonight. Flat. Sleepy. I'm happy to be here tonight."

So the check in continues in my old support group. Name, diagnosis. Meds you are currently on. How you are feeling, how the meds are making you feel. And so on. Pass the card to the next person. 

First order of business. Make sure no one feels suicidal, makes sure everyone feels safe to share. And then talk of what is going on with our lives. Work issues. Family issues. Medication issues. Sex. Anything or everything.

Sounds good in theory. But here's the rub. As the group went on for years, and people grew comfortable with each other, something happened. A p-doc change because of a new job and a new insurance company. All of a sudden, the gal sitting next to me who has been "Bipolar 2" is now "Bipolar NOS". What is this? The guy who has been labeled "Schizophrenic" is now "Bipolar 1". The college student who was previously labeled "ADD/ADHD" is now "Schizoaffective, and OCD".

What gives?

Two things actually. One thing, the easier one to grasp, is what has happened to me. A medication on your cocktail gave you some funky side effects. You never felt paranoid before, but now you do. Once that medication stops and is out of your body, the paranoia is over. The label remains. In my case, a pharmaceutical made me hear voices. I mentioned this to my doctor and saw my Axis I definition changed from "Bipolar 1" to "Bipolar 1 with Schizoaffective disorder". It went away after I was weaned, but to this day, the permanent side effect is I need my iPod with me 24/7 to concentrate, listening to talk radio or books on tape. If I don't have something in my ears with this type of white noise, my brain will not function.

My label changed. Not a big deal. It's been changed in the past. Almost every p-doc I have ever seen has changed it.

Here's the truth. You go to a new p-doc. They spend the first meeting or first two meetings asking you a deluge of questions. Based on the way you answer, and the knowledge of the p-doc they give you a label based on your questions.

The first time I was evaluated my p-doc had the DSM III. I was evaluated by an overworked medical student following a suicide attempt in the ER department, right before I was sent inpatient. That label was "Depressed". I was also labeled "Suicidal" and spent two weeks on a 1-1 suicide watch, eventually graduating to a 1-15 and then finally joining the rest of the hospital. When I was deemed well enough to get off that 1-15 and join the rest of the hospital patients, I got a new p-doc. He spent close to three hours with me and gave me a new diagnosis. "Manic Depressive". I stayed with this doctor for six years. By the time I left him because of a new job and insurance, the DSM III-R had come out and my new diagnosis was "Bipolar". He assured me it was the same thing. I understood. I had many psych courses in college, both undergraduate and graduate. I remember Schizophrenia was called "Dementia Praecox" at one time.

That's all well and good, but my old support group was really hung up with labels. One girl came in hysterical one night that she was no longer straight OCD, she was now diagnosed as a Borderline on top of it. As soon as she said it, I saw her friends, who previously liked her, now distanced themselves from her. Indeed, I know a therapist in real life who refuses to see anyone with that label. EVER.

Here's what I think about labels. Unless you are shopping for consumer goods, labels don't matter. A label is something a doctor throws on you, whether it's psychiatric or other so he has a number to submit to the insurance company to get money from your visit. It shouldn't define you.

Here's my labels. Susan. SWF. Forty something. Educated. Blonde hair, blue eyes. Very zaftig. Short,( five feet tall). Flat feet.

Diagnosis- lost my way in the maze of life following a bad relationship, and currently unemployed, I feel lost, adrift. I am searching for something to give my life meaning.

Yes, I am different than most people. I have a creative brain, not a scientific one. I overthink things. I feel things differently because of the creativity. Yet, I am no different than anyone else. Yes, right now I am sorely depressed. Melancholy. What ever you want to call it. I've lost my way.

Those are my labels. I think they help me define me much better than the labels my p-doc has given to me over the years. Bipolar 1, Manic Depressive, Schizoaffective, Schizophrenia. I don't think of them and I don't let them get me upset .Because I won't let the illness define me. I let me define me.

That's the sad part about my former support group. Though it means well, people never got passed the labels, and they let them identify them as people. They shouldn't. Let the doctor and the insurance company sweat them. You are a vibrant, wonderful, unique person. Your label is your name. But owning that, is the first step to achieving wellness.

And that is what everyone wants at the end of the day. To be well again. 

Saying Goodbye To My Support Group Hello To A New Kind of One

This past weekend I sent a note to the President of my local support group who is also, as chance would have it, the President of the State chapter as well. As of January 1, 2011 I won't be on the board of either group and unable to facilitate.

Seven years ago I started going to these meetings. And in all honesty, (since I've never been anything but honest in this blog) I haven't gotten much out of them. A lot of war stories that bind us together. The same problems with family and friends, and work issues.

But what I noticed over the years is striking, and upsetting. I've seen so many people come in from a long extended stay at a hospital, either private or state. They are on many many meds. I'm not a doctor, but is there a reason that someone has to be on five, seven, nine, different psych meds?
I've been on as much as nine at a time myself. Plus other pills to clear the side effects from the psych meds. Upset stomach, migraines, vomiting, even Miridia because one doctor was worried about all the weight I had put on in six months from Seroquel. (Note: He did not tell me to get off the Seroquel, though).
I've seen people come in and beg for answers about ECT. I've gone down on my knees and told them not to do it, to wait a while longer before engaging in such a procedure. I've been told to shut up because they were hell bent on getting this treatment and wanted to hear good things about it. And I can report, sadly, that those in the group who had it, had nothing happen, it wasn't the panacea it was touted as.

The older I get the more cynical I get. Maybe I've spent too many months in hospitals, in the trenches. I've seen the bad and the ugly. I don't know how many useless tears I've shed over this.

But this year, I hit the breaking point. To paraphrase Ginzburg, I've seen the minds of my generation destroyed. I've seen folks come in who were functional, who, now because of the drug cocktail they are on, unable to work and now on disability. I've seen the functional reduced to suicidal zombies, with any hopes for the future dashed and gone. I've seen people  go from fully fully functional to unable to do the simplest tasks for themselves, and if they didn't have the good fortune to have a husband/partner to care for them would be non compos mentos and most likely in a state hospital or nursing home for the rest of their lives. And I've seen those whose bodies have been shattered and practically destroyed from a suicide attempt that failed.

I've seen some successes, but those seem to be the people who are just on one drug not a cocktail, and rebound because they have a good therapist, or just rebound on their own when the depression lifts on it's own, or just by sheer grit and determination to ride it out and conquer it.

I'm tired. In the seven years I've been going, I cannot handle it anymore. I am mad as hell. Maybe it comes from my near death experience last month, when I was brought into the hospital and told last week I had actually started to die. Or maybe it's because I've been reading voraciously over the last year, books by Breggin, Szasz and Whittaker, among others.
Or maybe I just feel that people with the psych label on them are treated as second class citizens, not as human beings. This flies in the face of the fact that some of the greatest most talented and creative people in history have been labeled bipolar, schizophrenic, or depressed.

Right now I have to take care of me, and I have a long road ahead with physical recovery. When I am able, though, I want to spend the time with other groups I tend to agree with now, like Mind Freedom, Icarus and Psych Rights. I know someone personally who will say I've gone to the dark side, but someone has to speak up for those who cannot speak. I was grateful this past month when I could not speak, others spoke for me and got the word out.

Fourteen years ago, when I realized that shots of vodka and Everclear in my Snapple wasn't going to quell the suicidal ideation, I got sober.  I had hit bottom, lost everything I owned and was practically homeless, spending 18 hours a day in a 24 Hour Club. And one of the things I learned in AA was to pay it forward.

It's time for me in the New Year to do that. Pay it forward.I'm going to miss the old one and I'm still going to be an activist. It's just a different kind.