View Full Version : Dump the Stigma and Focus on Recovery


justhope
06-29-07, 08:25 PM
Dump the Stigma and Focus on Recovery

From Andy "Electroboy" Behrman (http://www.electroboy.com/)



For years, I suffered with a mental disability. I still do -- no one has found a cure for manic depression (bipolar disorder) yet. During those crisis years, though, nobody knew anything was really wrong with me. I was experiencing a wild rollercoaster ride of frightening highs and lows that put my life in jeopardy, but my disability was completely invisible. Granted, I was behaving rather erratically--flying from New York to Tokyo to Paris on business three to four times a month, counterfeiting art and smuggling tens of thousands of dollars back into the United States. At the same time, I was drinking heavily and indulging in drugs (self-medicating my mental illness), engaging in sex with complete strangers that I would meet in bars and clubs, staying up for days on end, and in general living on the edge.



But my disability remained an invisible one. Friends and family were convinced I was functioning just fine because I was efficient, productive, and successful. I had everybody fooled with my illness. While my manic depression remained undiagnosed, I secretly wished that my disability was a physical one--one that others would notice. Maybe people would be supportive and help me if I had diabetes or, God forbid, cancer. Maybe I needed to show up to the next family function in a wheelchair to get somebody's attention. I was helpless living with this invisible illness.

Once I was diagnosed, though, and given what I refer to as my "death sentence," things changed quickly. And no, my family and friends did not come rushing to my side to support me in battling against my illness. Somehow I fantasized that this was going to happen. All of a sudden I realized the stigma of having a mental illness--it hit me smack between the eyes. And the stigma was almost as bad as having to come to terms with the fact that I was mentally ill and needed treatment. The stigma, I realize now, "started" with me. I initiated it. It was my own fault and a result of my own naiveté at age 28.

When the doctor diagnosed me and used the words "manic depression" and "bipolar," I had no idea what he was talking about. "Manic" sounded like "maniac" and "bipolar" sounded like "polar bear," so I was completely confused. I was under the impression that the illness was degenerative and that I probably wouldn't live to see my next birthday. I asked the doctor how many other people there were like me--2.5 million people in America alone. He tried to calm me down and talk me through the diagnosis, but I was self-stigmatized by my new label. And then, of course, he had to remind me that I was now part of a category of people called "mentally ill."


Oh, God. I was a lunatic, a freak, a psycho, a crack-up, and a mental case. When I left his office on the Upper East Side of Manhattan and walked home across Central Park that snowy morning, I imagined being forced to have electroshock therapy like Jack Nicholson in One Flew Over the Cuckoo's Nest. I persuaded myself that I was overreacting, taking this too far. That could never happen to me. But actually, I wasn't taking it too far. Less than three years later I found myself in the operating room of a psychiatric hospital in Manhattan, lying on a gurney with electrodes attached to my head and receiving electroshock treatments--200 volts of electricity through my brain. The stigma first hit me from the "outside world" with a little help from the written prescription my doctor gave me. It was filled out for medications thought to control my manic depression.

The prejudice began then. On seeing it, my own neighborhood pharmacist remarked, "Your doctor's putting you on all of this medication? Are you okay?" I didn't respond. I paid for my four prescription drugs and left the pharmacy wondering exactly what he meant by "all of this."
Was I some sort of "mental case" because I was now taking four different medications? Did the pharmacist know something about my condition that I didn't know? And did he have to say it in such a loud voice, just hours after my diagnosis? No, he didn't. That was unkind. It seemed that even the pharmacist had an issue with mentally ill patients--and trust me, mentally ill patients in Manhattan were the "bread and butter" of his business. Next I had to tell people about the diagnosis.
Scared to death, I waited a week until I got up the nerve to ask my parents to dinner. I took them for a meal at one of their favorite restaurants. They seemed suspicious. Did I have something to tell them? They automatically assumed I was in some sort of trouble. It was written over both of their faces. Assuring them that I wasn't, but had some news that might surprise them, I just spilled the beans.

"Mom, Dad, I've been diagnosed as a manic depressive by a psychiatrist," I said. There was a long silence. It's as if I'd told them that I had two months to live (interestingly, the same reaction that I had when my doctor told me). They had a million questions: "Are you sure?" "Where did it come from?" "What's going to happen to you?" Although they didn't come out and say it, they seemed concerned that I was going to lose my mind. Oh, God. Their son had a mental illness.

Was I going to end up living with them for the rest of their lives? And of course, they wanted to know if it was genetic. My telling them that it was didn't exactly make for a pleasant conclusion to the dinner. Not only were they now faced with the stigma that their son had a mental illness, but the stigma that mental illness ran in the family. With friends, it was easier to break the news. They seemed to know more about manic depression and were supportive of my getting well and staying on a medication regimen. But all hell broke loose when medication didn't manage my illness and I opted for the last resort-- electroshock therapy.

My friends had a really mentally ill friend who had to be hospitalized and "shocked" to maintain an even keel. This was too much for some to handle, and those people simply disappeared. Nobody seemed to want a friend who was now officially a psychiatric patient and, after electroshock, a certifiable zombie. In fact, everybody seemed frightened of me, including my neighbors, my landlord, and shopkeepers who I had known for years. They all looked at me funny and tried to avoid making eye contact with me. I, however, was extremely up-front with them. I told them all about my illness and was able to explain my symptoms as well as my treatment to them.

"Have faith--one day I'm going to be just fine," I seemed to cry out inside. "I'm still the same Andy. I've just slipped a bit." As there weren't many who knew much about my mental illness, a lot of people had the attitude that I had the capability to "kick it" and get better instantly. This was the most frustrating attitude for me.
My manic depression was ravaging my life. But because nobody could see it, many people thought it was a figment of my imagination. Soon I started thinking this too. But when the symptoms--the racing thoughts, hallucinations, and sleepless nights--were out of control, the fact that I really was ill was reassuring. The guilt I felt for having a mental illness was horrible. I prayed for a broken bone that would heal in six weeks. But that never happened. I was cursed with an illness that nobody could see and nobody knew much about.

Therefore, the assumption was that it was all in my head, rendering me crazy and leaving me feeling hopeless that I'd never be able to "kick it." But soon, I decided to cope with my illness like it was a cancer eating away at me and I fought back. I dealt with it like it was any physical illness. I dumped the stigma and focused on recovery. I followed a medication regimen, as well as my doctor's orders, and tried not to pay attention to others' ignorant opinions about my illness.


I fought it alone, one day at a time, and I eventually won the battle.




Andy Behrman is the author of Electroboy:
A Memoir of Mania, published by Random House.
He maintains the website www.electroboy.com (http://www.electroboy.com/) and is a mental health advocate and spokesman for Bristol-Myers Squibb.
The film version of Electroboy is being produced by Tobey Maguire. Behrman is currently working on a sequel to Electroboy.

Crazy~Feet
06-29-07, 08:32 PM
Thanks for posting this, lil LinkSis :) the part I liked best was something I tell myself quite often:

"...the fact that I really was ill was reassuring."

Some days, that little bit of knowledge makes all the difference for me and for the girls.

Luvs ya!

justhope
06-29-07, 09:02 PM
You are welcome as usual.

One of the only things that has kept me together, and served as a form of therapy to me, is absorbing every bit of information I can about Bipolar as it relates to me and Keenan.

I can tell you , as a mother who just went through the legal system with her child, I would not have faired near as well as I did for him, if I had not been educated.
Now I am not bragging here, only encouraging more people to educate themselves for their sake, or for the sake of someone they love who has Bipolar. I was told by many of the support team that we gather along the way in this battle for Keenan, that if I had not been for the fact I knew as much as Bipolar as many of them, and had spoken as intelligently, openly, and in the form of "advocacy" for Keenan and our entire family, there could have been many times, this would have not gone in the direction it did.

I did it in the beginning for myself to cope with it. To convince myself there had to be ONE stinking good thing about having this, so I could live with it.
Then it fed my hypomanic episodes. When I was down it soothed the depression. In the end, it most assuredly had a huge part in swaying the judicial system who could have at any moment taken my son away until he was an adult. I am not special. I just bit in and decided not to play the victim, but to bring understanding and educate. To make people accountable, including myself, and Keenan, for a disease that effects a huge percentage of the children and families they deal with. Simple. All you have to do is be able to read, and have the determination to fight instead of curl up and die in the wake of something that can cripple you if you let it.

I much perfer to fight, in a healthy way. Instead of with myself in an self destructive one.

jeaniebug
06-30-07, 07:40 PM
Hope,

I also want to thank you for posting that. Andy is a much braver person than I, I don't talk to ANYONE about my bipolar except my neuro-guy who dx'd me, my pdoc who works with me on meds, and the people here on the forum. The stigma he talks about is alive and well. It's hard enough to deal with this without being treated like a leper as well.

My family already thinks I am worthless, and I don't need anymore criticism or suggestions or behind-my-back comments from them! They are all 100% sure any and all possible "craziness" is the fault of my biological Dad anyway, even though I can also see it (retrospectively) in my Mom's aunt, and there is obvious ADHD in Step father, including my half -sister, her spouse and all 3 of their kids. **But I digress, sorry!**

But reading about it really helps, like you said Hope. Learning everything I can has helped. And talking to others who are bipolar, and also have ADHD is perhaps the most help of all.

I have a question for you guys. I think my daughter has symptoms of both ADHD and also bipolar. She is nearly 21. My neuropsych guy said that he couldn't "see" her because he diagnosed and treated me. The Doctor he referred her to (who is also his wife) thinks she is just a little depressed and just needs "talk" therapy with her (the doc). Do your kids see the same doctors you do? Any idea why this would be considered a conflict? I did go with my daughter to her first appt with this doc and she obviously did not think my being bipolar was relevant to my daughter's state of mind. My doctor did a bunch of testing, but my daughter had no testing at all.

She was doing really super great for a while, and now she is really down again. Looks like cycling to me!! :eyebrow:

But anyway, you guys are great, and thanks for being there for me!

I'm so glad Space is doing so much better (at last!) and I'm really glad that Ke made it though the past few weeks, and came out on top. And that you made it too, Hope! Kuddos!

I know your stories have certainly inspired me, and I am sure they have touched many others besides. I notice there are always quite a few people visiting the bipolar section, although I suspect that quite a few of them are shy about joining or posting. Y'all should jump in here and join us. The water is fine! Well, there are rocks and big waves but hey, it's an adventure! :D

Imnapl
06-30-07, 08:51 PM
I know your stories have certainly inspired me, and I am sure they have touched many others besides.What she said. :cool:

justhope
07-03-07, 12:20 PM
Thanks Imnapl...always happy to share what has helped me.


And Jeanie, I think that is a load of crap from the doc, unless it's something in your state?
Keenan and I have always seen the same, phyc doc?
Well except when pediatrician was handling meds in Texas when he was young.
The doc we see now, specializes mostly in kids, but he ends up treating the parents of these kids, since most have the same issue.

It actually helps us, we tend to be so much alike same meds that work on me work on him...he is open to working with us based on my history ..etc.

Lafnalot
07-27-07, 11:25 PM
This just moved me to tears.

Garry
08-20-07, 09:22 PM
long time no see

Garry

email me or pm me

Crazy~Feet
08-20-07, 09:39 PM
Hey Garry, are you back to stay for a while?

Lafnalot
08-20-07, 10:21 PM
Hi Garry--I dont have the email addy on this computer but its good to see you also,and it has been a long time.