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Teenagers with BIID have it tough
Written by Sean on Saturday, July 19, 2008
I received a plea for help earlier this afternoon from a teenager who has BIID. This "kid" has been in touch on and off for about a year. He’s not the first teenager with BIID to contact me, and is unlikely to be the last. His email reminded me of the really hard time *I* had as a teenager. Having BIID is not easy in and of itself, but being young and having BIID makes it even more difficult, because the only recourse available to handle the pain of BIID are pretty much unavailable to you. It just seem incredibly unfair.
Of course, life’s unfair some of you will say. Still…
Using a wheelchair is the only thing that appeases my BIID demons. It is the same with most people I know who have BIID and need to be paralysed. But a teenager can’t just go and purchase a wheelchair, much less use it at home and/or in public. As a kid I managed to smuggle a wheelchair in the basement once, and it was good, but it was also illicit and difficult and having to keep the secrecy reinforced the feelings of guilt and shame that are so destructive to our souls. I know what helps. I know you, the teenager with BIID, can’t do that. But keep in mind that it’s only a few years before you can get there. Patience. Yes, I’m telling you to be patient, because you really have no choice. But you know that day will come.
There is a feeling of isolation as well. You can’t just go and tell people you know. It’s hard enough to deal with the usual "growing pains", and other kids are merciless when faced with even minor differences, let alone something as big as BIID. Do you trust your sibbling? Are they blabber mouths and no sooner you’ve told them their entire circle of friends will know about it? What happens when you show up at school? No, unlikely to be a good idea to tell.
So you keep it inside, and it grows and grows and it hurts inside because you don’t really have anyone to talk to. And you start to change. Your teachers notice a difference in you. They question your lack of enthusiasm. They may suspect you are depressed, but there’s no way they’ll know you have BIID, and even if they did, there’s dick all they can do to help!
Then there’s the case of the parents. What do you do - tell them or not tell them? I told mine when I was in my early 20’s. They knew something was happening anyway. As much as we may dislike our parents, they know us best. They can sense something is wrong, even if they don’t know *what*. If you live under their roof, it is a difficult decision. It’s taken a long time for my parents to come to some sense of term with it. I was not living under their roof when I told them. I’m not sure I could have handled things. Sophie was also not living under her parents’ roof when she told them, but has now moved back in, and is having to basically pretend it was just a phase. Yet, other parents have reacted better. And sometimes, it’s better to have it out in the open.
Of course, your parents may insist on you going to the shrink. That’s not such a bad thing. A shrink can actually help you figure out your own emotions and how you feel about your BIID. Of course, they can be damaging too. As a young person, you are highly influencable, and if you get a shrink that hasn’t got a clue about BIID, then you could be in trouble. But there are resources out there. There’s this site, there’s the community of people that hang around this site, most of them great folks. Besides, agreeing to go to the shrink will get you brownie points with your parents, because it shows willingness to go forward.
I guess that’s the one thing teenagers with BIID have today that I didn’t have growing up. They have access to grown-ups with BIID. We all need some kind of roll-model (no pun intended). We need people to help us through the difficult steps of life. And we’ve been there, we’ve been through the agony of self-doubt, and shame, and guilt, and how do you tell the parents (or do you tell them at all), of *needing* that chair to hang on to sanity, of dreaming of the day we’ll be on our own and able to do what we need to.
And there is not much I can tell my young correspondant. I can give him my opinion, but I’m not in his situation. I cannot give you a recipe for success. I cannot guarantee that one path of action is going to be better than the other.
In the end, the only thing I can say is "mate, I’m here to listen to you, and I won’t judge you, and there’s probably no stupid trick you want to try that I haven’t already tried before you. I am here for you, and I care."
Tags: BIID, body identity integrity disorder, Teenagers
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2 Comments
I understand very good what you mean. It could be that i’m still a teenager, an adult but a teenager, just 18 (here you become an adult at this age). When I lost myself thinking, lots of fantasies of having the driving license, take the car go anywhere and rent a wheelchair, comes to me. In my dreams, me sitting in a wheelchair is something that appears very often. Imagination is the only way we have to have some relief, but as Gordo said is only temporary.
I don’t know why I’m telling that, maybe it’s because reading throught this page I’ve learnt many things: discover that, accept myself and the situation, understand that I’m not crazy…
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1 On 19 July, 2008, Gordo said:
It’s only been 3 years since I was myself a teen with BIID, and as a university student, I am still living under their roof (and probably will until I get married, which is a cultural thing with us of Chinese descent). It’s really tough, and I agree with Sean when he says patience is the only real coping mechanism available.
Even now at 22, I have to be patient about BIID, waiting for the right opportunities to wheel and still waiting for the right time to tell my family (which is harder than it sounds, since they are the ultra-traditional type).
One thing that I found that really helps is writing about it. Not only in blogs like these but also in fiction. This might not work if you’re more of a numbers person, but writing a fictional world modelled after yourself is a great outlet, and just imagining yourself in certain situations (albeit in typed words) is pretty therapeutic, even if it doesn’t solve everything and is only temporary relief. Writing is the one thing that helped me through the trying times in high school, that’s for sure.