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Blog > Thoughts > Other's Thoughts > Chloe's Thoughts > Why the Shame?

Why the Shame?

Written by Chloe on Wednesday, February 11, 2009

Several of you have got me thinking about why so many of us are, or have been, ashamed of how we feel. Sometimes you write posts that haunt me. One such is Silent’s "I have BIID, I am Buried Alive". There is a deep emotional honesty there, and a lot of it is about shame.

It happens that earlier in the day that I am writing this, I had lunch with my close friend who is a psychotherapist. She takes antidepressants, and we were having a discussion about depression. She made the point that using antidepressants to enable one’s brain to function better is no different from using glasses to see better. And yet…

I never try to hide the fact that I wear glasses (or contact lenses) from anybody. Nobody thinks less of you because you wear glasses. I take Prozac, and I don’t feel ashamed of it. I’m not ashamed of having depression. And yet…

Although I am pretty open with my friends about having depression, there are people I don’t want to talk to about it. Why? Well, there is still a stigma about mental illness. There really are people out there who consider you to be a lesser mortal because of it.

Then there’s the wheelchair. Isn’t there an analogy between using a wheelchair for my BIID, using Prozac for my depression, using glasses for my bad eyesight? And yet… There are fewer people that I tell why I am really using a wheelchair than I disclose that I take Prozac. Why? Is it them? Or is it me?

I want to take this all the way back to the beginning. What was the first time I ever felt ashamed for doing something vaguely equivalent to using a wheelchair? I remember it very well. I was seven years old. It’s not clear that it had anything at all to do with BIID. It doesn’t seem like it’s connected. I had put a number of band aids all over my face (well it was in England so it was elastoplast rather than band aids). Why did I do this? It was a long time ago so I’m just coming up with psychological conjecture. Perhaps I was trying to heal the emotional wounds inside my head? I don’t know. What I didn’t know back then was that I had a massive allergic reaction to such things. Although I had left them on for only ten or fifteen minutes my face broke out in extremely obvious raised bright red weals. My parents said I couldn’t be seen by anyone. I had to stay indoors until my skin was back to normal. That made me feel ashamed. They asked me what I had done. I lied. Why would I lie? What is so bad about doing such a thing that I would have to lie about it? I said I had put tape (like packing tape) on my face. How is that better than a band aid? My parents always made me feel naughty and stupid and wrong whenever I injured myself. Maybe admitting to the band aids would have been like admitting to an injury? Maybe… I don’t know. This is the first time I have ever told anybody that story. That’s how deep the shame goes.

I didn’t get caught again until I was twelve. By that time I was exploring BIID feelings by using elastic adhesive bandages on every part of my body. I still had the allergy though, so I had to be careful about how long I left it on various parts of the body depending on whether it was likely to be seen or not. I only slipped up once. I know that I was twelve because there is a photograph of me with a very obvious bright red weal on my arm. I had forgotten to conceal it. The date is on the back of the photo. My parents asked me about the weal, and I lied again. I said that it was a burn. Burns were very plausible because I did in fact burn myself quite a lot, both from acids and fire in my garage chemistry lab. But why couldn’t I say what I really did? Was it so shameful? Why is it better to have a real injury, such as a burn?

I only got caught one other time. My sister suddenly came into my room while I was in the process of bandaging my foot. It was before she went to college, so that means I was no older than thirteen. I didn’t tell her the real reason I was bandaging my foot. It would sound crazy wouldn’t it? My sister knows all about my BIID now. Not a problem. Why would I perceive it to be a problem when I was thirteen?

The allergy gradually became less and was completely gone by the time I was around twenty. I liked this a lot because then I could leave stuff on for weeks at a time.

I used to be ashamed about being intersexed. I have no specific memory of anything my parents said, but somehow I knew from them that it was a completely taboo subject and that I should never tell anyone about it. My first disclosure to a friend was when I was twenty one. It was scary, but she was completely accepting and supportive. The more people I was open with about it the more the shame fell away. It was all in MY head. Now it’s not the slightest problem for me to talk about it. I don’t bring it up unless it’s relevant to a conversation; as it is now since I am talking about shame.

Alright, I have glossed over some harsh realities. I look like an ordinary woman, and nobody thinks otherwise unless I tell them. But when I was nineteen I was a strange ambiguously gendered prepubescent adult. People stared, and I was called a "freak show". People do in fact make fun of hermaphrodites. Well I think it’s all pretty funny now. My partner frequently makes hermaphrodite jokes about me and I think it’s hilarious.

The BIID shame began crumbling two years ago. Specifically it was the day I asked my partner if she minded if I got a pair of KAFOs (I had to explain what they were first). She couldn’t imagine why anybody would want to do such a thing, and I was evasive about the reason. However, she was just fine with me wearing KAFOs around the house, and the shame started to evaporate.

Now there are more than fifty people (in addition to you readers) who know about my BIID. I have plenty of friends with whom I can talk openly and without shame about it. And yet… And yet… I don’t tell everybody about this. Is it me? Or is it them?

Tags: Bandages, BIID, Depression, KAFOs, Mental Illness, Shame, Wheelchair

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