Stigma Stigmata

If I stop pretending to be symptom free, will I become more emphatically bipolar than I am now? How would it affect my life? Would I become more, or less, likely to form strong friendships? Would I become more, or less, well?

I’ve been giving a lot of thought lately to the word “stigma”. Stigma in the context of “erasing the stigma of mental illness”.  What does that mean, exactly? What are people getting at? Do I feel stigmatized, and is it possible to feel stigmatized if I live in the closet, so to speak, about my illness?

I’ve always thought the idea of a public movement about stigma was a bit worrisome.  Is the idea that we try to shame the public in to pretending that the symptoms of mental illness are not creepy, disturbing and disruptive to be around — that employers should be obligated to retain employees who may be quite unbalanced because they are mentally ill? The political independent in me thinks that’s hogwash.

Pretending not to have the symptoms of a major mental illness is dear to me. I become terribly upset with myself when I realize I’ve lost control over some aspect of that – that I have given someone a reason to wonder what’s wrong with me.

I have good reason to pretend I am normal. Attempting to introduce my symptoms in to a conversation (i.e., “Ug, I’m really feeling paranoid/anxious/unable to focus/suddenly demotivated/hypomanic/hearing music that isn’t there/having horribly intrusive thoughts/having racing thoughts, etc., etc. lately”) zooms me away from the person I’m talking to. No matter how comfortable I may have felt with the person up to that point, or even how intimate our relationship may be, I feel and see the freezing chill that suddenly surrounds us; the utter distrust thrown in my direction. The person loses confidence in me, usually forever. The person may, in fact, turn on me in the future. It isn’t difficult to imagine the rolled eyes when my name comes up, or the leap to conclusions about my character, or the utter dissipation of respect for or confidence in me.

Is that stigma at work? I’m not sure. It certainly may be. Is that a reasonable reaction? I’m not sure. It certainly may be.

What I wish for is compassion. I wish for encouragement to seek assistance.

In my last job I was up front with each successive manager about my mental illness. Each manager thanked me for sharing the information with them. One – the first manager I told – reacted in what I thought was rather the perfect way.

When I initially went to work for that company I was very ill. All of my symptoms were in the red zone. I developed a plan of attack to try to get them under control, but it required living with my parents in another town for a few weeks and making major changes in the number and amount of medications I was taking. It wasn’t at all clear to me that I would be able to work through that period, but I wanted to try to. I talked to my manager, explained the situation. As it turned out, one of her best friends was bipolar.

After getting approval from her own manager, my manager laid out the ground rules in a very open way: I would continue to work remotely while I stayed with my parents; I would remain under a psychiatrist’s care; I would continue to take my medication (“I’ll know if you don’t,” she warned); I would not work over time (I’d been working overnight at the office, sometimes 20 hours at a stretch). Last, but not least, was this simple rule: I would do my job.

Because of my manager’s support, I kept my job and I followed her rules — and I improved tremendously. Knowing that she understood that I had a major illness that could be managed made a huge, huge difference for me. I blossomed.

I approached my first annual review with resignation, expecting to be told that the special treatment I’d been given, and the severe troubles I had exhibited, would leave me in the bottom category of performance ranking. I was surprised, then, when the manager gave me a raise, handed me a bit more responsibility, and praised the way I had fought through my crises.

In the last two years of my employment at that company (I worked there for eight years), I began to become ill again. When I went in to a crises I told my manager (a different manager, by then) that I needed time off, and he begrudgingly gave me a week. He also made it clear that he didn’t want to be involved. He also made it clear it would be better for my career if I kept it to myself. He also sent me a phone number for some group in the HR department and encouraged me to “officially” register myself under a special designation of some kind, but he side-stepped the reasons for doing so. When I attempted to explain a little about Bipolar Disorder to him he interrupted me and told me it was inappropriate for him to discuss it with me.

I felt that the company had put a lot of faith in me, and I didn’t want to let them down. I’d been promoted. I had a big job I had been excelling at. The message was clear: the impression was that I was using a trendy diagnosis as an excuse to ask for special treatment.

And from the day I told that manager, really, my career began going down the tubes. And so did I. I loved my job in a very big way, and my identity had become wrapped up in it. I was afraid that if I failed it would mean that the pride I felt in having overcome the worst time in my life was just an illusion. And so I pretended not to be ill in a very big way. I tried getting off medications. I distanced myself from my diagnoses. I went back to my old habit of working all night in an attempt to make up for the utter loss of focus I was experiencing during the day. The project I was managing won a big award. I was given a bonus and a “perfect” rating at my next annual review.

And then my job was given to someone else.

And then I pretty much fell apart.

A few months before I quite my job I told my new manager about being Bipolar. This manager told me her sister, also, had Bipolar Disorder, but she said it in such a way that I thought she might as well have been saying, “You’re one of those people — one of those people who makes excuses all the time.” I got the feeling she didn’t particularly like her sister. And, like my manager before her, she advised me that further discussion would be inappropriate.

By the time I left I was unable to work, really, which was probably OK since I didn’t have any work to do. At all. I had been promoted to those nether regions of corporate America that are reserved for difficult employees who might have cause for a law suit if they are fired. I spent my morning surfing the Internet, and my afternoons drinking. I decided to leave the company one afternoon on a work day when I found myself shopping at Macy’s instead of sitting at my desk because nobody was looking for me any more. ‘Surely I have more pride than this,’ I thought to myself.

I guess, then, that stigma (to me) is really a lack of compassion. A lack of discussion. A general mistrust based on a diagnosis. A lack of support. A kind of shunning as a reward for reaching out for understanding and assistance that I’m not sure I deserve. Stigma means asking for special treatment and not being deemed special enough to get it.

I miss those days at the beginning of my career with that company. The thrill of working through something terrible in an appropriate and honest way. My boss rooting for me from the sidelines.

I don’t know which I wish for more: that I had done a better job of pretending I wasn’t sick, or that I had done a better job of standing up for myself because I was sick. But living in between those lines didn’t help. That’s for sure.

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BringChange2Mind

UPDATE: I watched the Bring Change 2 Mind commercial last night. It was so profoundly wonderful that I’ve had to revisit the whole campaign. I’ll update this page once I’ve done that.

I recently visited Bring Change 2 Mind, and was a bit surprised at how… empty?? … it seems. I’m disappointed to find so little out there, beyond pictures with people wearing t-shirts that say things like, “Depression” standing next to other people wearing t-shirts that say things like, “Better half”. I mean, they’re all smiling and happy, which is nice. But something’s missing, here. Like a complete picture. Where, for instance, are all the symptoms reported by the people who actually have a mental illness? Where is anything other than yet another rewrite of the DSM-IV criteria for Depression, PTSD, Bipolar Disorder, and Schizophrenia? Where is a description about stigma as being anything other than calling someone a derogatory name? What conversation is anybody supposed to have about mental illness (that they aren’t already having), other than the one that begins, “Hey, did you see where Glenn Close has a sister who’s mentally ill?” — you know, the conversation that ends with the familiar, “Huh.”

I hope Bring Change 2 Mind grows over time. Maybe they’re hoping to generate discussion, and grow the site based on community input. Kudos for Ms. Close and her sister for pulling this together and granting interviews/writing articles to discuss it. I hope they don’t mind that I’m thumbnailing their logo — hoping the link will make up for it.

I was hoping for so much more. But I’m not sure why. If people who are mentally ill don’t have the language to describe their world, why should people who are not mentally ill have one? After all, you don’t expect me to know how to speak French just because I know the language exists, do you?

But while it’s on my mind, let me share this idea with you: what if the stigma was something that only exists because most people don’t understand what mental illness is like for or does to a person’s daily life, and what if that gigantic gap exists because the mental health profession in general isn’t listening closely enough in general?

I guess what got my gander up about all this tonight was a recent post out on The Secret Life Of A Manic Depressive. An absolute doll, a young woman of 24 in the UK, with a humongous talent and wit, wrote about a hallucination she had, yesterday. It was an awful hallucination, as most of them are. And she was aware that it was a hallucination even as she was unable to do a thing about her reaction to it. She didn’t want to tell her CPN because she assumed she’d get the same reaction she’d gotten in the past, which was (evenidently), “If you know it’s not real, it isn’t a hallucination.” Other people who commented on her post said they’d gotten the same reaction to their hallucinations when they spoke to their doctors about it. And I got the same reaction from mine when I called him, panic-striken, after my worst hallucination.

There are so darn many symptoms of mental illness that never make it in to the public eye. Like the strange conundrum of seeing/hearing things that aren’t there even while know they are not there. The odd physical “strange” feeling that you can’t quite put your finger on, but that definitely means trouble is afoot. What about the psychological distress that occurs because people (a) don’t know what your symptoms are, and (b) don’t trust you to tell them what they are because – HEY! YOU’RE CRAZY! WHAT DO YOU KNOW?!

And by “people” I do, far so much seriously than I would like to, mean, the mental health profession. And I guess one reason I feel so strongly about this is because I do see how insanely hard and uncomfortable it would be to be a psychiatrist or a therapist or a social worker. I mean, if you think it’s hard to help yourself or a close family member, imagine making it your life’s work.

So the question is: if Glenn Close isn’t the answer, and our current model (internationally) of mental health care isn’t the answer, what is?

And I have a proposal to make that may sound, well, crazy, but here goes: what if the mentally ill people of the world got together and decided what mental illness is, and what the world needs to know about it, and what works, and what doesn’t?

Seriously.

This is based on an idea I had one night while so out of my mind with side effects and mania that I had temporarily lost the ability to – get this – speak. I surmised that the only way we will ever find a cure for mental illness is if it is found by not just one individual, but a global conglomeration of mentally ill people. And why not? If you’re mentally ill yourself, you know what we’ve got going for us: intimate knowledge of symptoms, a deep desire to find answers, a vast body of knowledge gleaned from researching every scientific finding we can get in front of our eyes that could even possibly make life easier.

And here’s another idea while we’re at it. This one is based on my entire stay at La Hacienda last summer. Let’s all get together and create some havens for people with mental illness. Not traditional mental hospitals. Not halfway houses. Not emergency rooms, or low-rent social projects, or ridiculous out-patient “group therapy” alternatives. Let’s put together a decent place for people to go when they are in crisis, and let’s offer really great care based on what people who have been there know about getting better. Let’s do it. Maybe that way, the next time my life falls apart, I won’t have to convince my insurance company that I’m an alcoholic in order to get to a facility with good food, good beds, daily medical care, and education.

Sorry to rant. But there you have it. The frustration of the mentally ill blogger.

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