Current BIID support groups

If you’ve done much research on BIID you’ve probably come across numerous references to a website called transabled.org. You probably then tried to find this site, and got either a 404, a “server not found” message, or a domain squatter’s advert (“this domain is for sale” or “find other content about transabled” with a bunch of spammy links) depending on how long ago you looked for it. The bad news is, you’re not alone. The good news is, you’re not without (all) hope.

In its heyday, transabled.org was indeed the most vibrant community of people with BIID around. People from all over the world and with diverse medical histories contributed to the site, which was an unusual mixture of a forum, a blog, and a collection of informative articles. The goal of the site is not entirely clear either, as in some ways it seems to be aimed at increasing awareness of BIID while the users definitely regarded it more as a support group. Run by the former BIID sufferer and advocate Sean O’Connor, the site sadly disappeared at the end of 2013 along with the rest of Sean’s online presence (we still don’t know what actually happened to him). Almost all of the content has nevertheless been archived at the Wayback Machine and you can read it here.

But while that may be good for informative purposes – and indeed I have gained a lot from reading the archives of the site – it’s not exactly exciting news when you’re looking for a support group, like I was when I first found out about transabled.org. Looking further then, one finds a number of obscure Yahoo groups – the ones I found are all geared towards the blindness variant although I have been informed that there are similar groups catering for the other variants – but those are also either no longer existent, dead, or are orientated towards the somewhat more… shall we say, “icky” kind of content.

Indeed, despite the growing awareness of the condition, much of the more community-centred online content regarding BIID has disappeared. Personal blogs that get linked to all over the place have just simply disappeared. Those that haven’t disappeared haven’t been updated for the last ten years, and contain links to even more non-existent sites that only serve to hint at what had once been. Tracing these connections through the Wayback Machine is indeed a fascinating exercise, and can again be useful when you’re trying to dig up every last scrap of information and opinion that you can find on BIID, but still, we’re no better off with looking for someone to discuss these things with.

There are a few personal blogs here and there that have actually been updated in the last six months, such as the one that I’m not allowed to link to anymore (you can find a link on my blog if you look for it) and a few others which I haven’t linked to or read in great depth mainly because they’re about variants of BIID other than blindness. But personal blogs are only really going to get you in contact with one other individual, as the comments sections on those blogs are practically empty (just like mine ;-) ).

But I’m going off-track here. The point is that there aren’t really any good online communities around BIID anymore. For some reason they seem to have all more or less disappeared. Nevertheless I have managed to track down a few small communities, and if you’re desperate you might want to check these out:

  • http://forum.biid.ch/index.php – believe it or not, this is the only BIID-specific forum that I can track down. A far cry from transabled.org, and almost entirely in German (any English posts that you find there are likely to be mine, or a Google translation by someone who decided to be courteous to me), this is also a very quiet forum – although apparently there’s also a “private area” which is supposed to be more active although you have to request permission to view and/or post in it and I can’t figure out how to request that permission because the instructions don’t translate nicely with Google translate.
  • http://ahiruzone.com/ – there’s supposed to be a community here and they seem quite active although the forum seems small (I assume there’s more if you register). I have not checked this site out as it is aimed at wheelchairs however the combination of naturally-disabled and BIID wheelchair users seems interesting (although I would be surprised if there are actually more than a few naturally-disabled wheelchair users on the site).
  • https://groups.yahoo.com/neo/groups/fighting-it/info – not the most active Yahoo group, but the only one that caters specifically for BIID. Nevertheless I am subscribed to this group and I can tell you that it gets a lot of new users – mostly the amputation and paralysis variants, as expected – but most if not all of them just introduce themselves and then become lurkers. Most of the time, sending a message to this group feels like throwing it into a black hole.

Of course there’s always the comments section on my blog too ;-)

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6 thoughts on “Current BIID support groups

  1. I am fifteen years old, and if being a teenager wasn’t hard enough I also wish I was a paraplegic. It is the thing I wished for most this year and I am so mad at myself for wishing it. What is the meaning of life if you can’t have the thing you wish for most. Sometimes it is so hard not being able to talk to anyone about this especially since I know it is such an awful thing to wish for. I hate being this way and I wish the pain would go away

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    • It doesn’t matter whether or not other people think it’s an awful thing to wish for, that doesn’t mean that you have to feel that way about it. Your life is your life, your identity is your identity, and your body is your body – it’s up to you how you feel about it. The first step is learning to accept that this is the way you are, this is what you desire, and there’s nothing wrong with that.

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    • I just wish that I didn’t feel this way because I am never going to become a paraplegic so I am constantly going to be disappointed and depressed

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      • You cannot definitely state that you will never become a paraplegic.

        But even if you don’t, this is still who you are and it’s up to you to make the most of it. Many people with BIID don’t get their required disability, but they don’t let that get in the way of enjoying other areas of their life.

        Have you tried pretending? While it’s not perfect, it works wonders with managing BIID. If you haven’t already, I highly recommend that you put your self-loathing aside, get a wheelchair, and start using it regularly, even in public.

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  2. After reading your article, I was saddened to hear that its hard to find a proper community.

    I’m not a biid sufferer, I’m the one on the other end. The carer, partner whatever.

    I’ve been with my partner 8 years and he only started to get the urge few years after being together.
    Was diagnosed with it a few months back and put on antidepressants.
    He is self destructive and would rather be alone than actually work on himself.

    I was hoping to find something that could shine through this darkness. Some kind of treatment that could help him manage it but nothing.
    Some pills but no mention of therapy.

    Is there no hope for the sufferers?
    Other than cutting off the limb?
    ( btw he only wants to cut off a finger).

    Any advice is much appreciated

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    • Antidepressants don’t work for BIID usually. The one treatment that I have found to be very helpful is pretending – that is, pretending to have one’s required disability.

      However, not to lessen your concerns, I’m not sure that his issue is in fact BIID. Most people who have BIID require large amputations or other non-amputation disabilities; apparent BIID sufferers who desire small amputations usually turn out not to be BIID sufferers. Maybe talk to him about his desires/requirements and try to find out the reason or drive behind them – unless he actually *identifies* as someone with an amputated finger and/or a disabled person, then he probably doesn’t have BIID, as BIID is an identity disorder and unless there’s an identity component to his desires then it’s not an identity disorder. There are other reasons why he might want to cut off his finger, and finding out the true reason behind his desires is an important step in treatment, especially as many of the other causes are easier to treat than BIID.

      I hope this makes sense.

      Thanks,

      Micheal

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