transabled.org

I have the same fears of being seen by people that only know me as a wheeler. The athiest group that wheelmouse and I go to only know us as wheelers. In the back if my mind, I’m always paranoid that someone from the group will see me walking. But now I’m not that worried now that I’m wearing my AFO full time so I can say that I can walk as long as I’m wearing it.

Hang in there and do what feels right.

As someone who has wrestled with the “what if X sees me doing Y” issue, I find that it is less of an issue than most people with BIID think.

If you have a reasonably plausible explanation, it does not really matter if people can poke holes in it. It’s just not polite to poke holes in people’s reason why they use a medical device.

Outstanding! I am glad to read you are taking the bull by the horns. To hell with what other people think. It is your life, your peace of mind, your happiness that is being served here. You do not need to explain to anybody. They are likely not smart enought to figure out the holes in your story, or suspect why you use a wheelchair.

You wrote once about spending a weekend with a friend who was disabled. Regardless of her physical appearance verifying her need for a wheelchair, is she often in a situation where she is explaining to people why she uses a wheelchair?

Why should any of us add to our negative self feelings by worrying about what the F*?& other people think? They are just obstacles that you must navigate your ‘chair around.

Your openness in your blog has helped me understand more about BIID, which is why, I now feel that if you are in consult with a psychologist who helps you keep grounded and this makes you happy, then why not.

So - the story. First of all anyone who doesn’t have a differential diagnosis won’t go to rehab. So, if you didn’t get hit by a car, fall down a cliff, or have some obvious immediate impairment, you won’t get rehab, because if it is agressive secondary MS for example, you could injure someone giving them SCI therapy. So wheelchair use without rehab is quite common. Also (I don’t recommend this route) sometimes the nervous system stops working for non-controllable traumatic reasons - like after a rape for example. The person isn’t ‘faking’ but the mind has just shut that body part down and until it decides to, it will stay shut down (this has nothing to do with the conscious control of the person themselves).

A simple yet effective reason is subdural hematoma. Which means you are in a chair because you sometimes fall down (for instance episodic hypotention, POTS or delayed POTS, some form of anemia, etc). I am sure you actually do faint at times (most people do), so using a chair to avoid falling and hitting your head on the concrete is not only simple but also probably in some ways true (hence eliminating the need for confession). Also, it means that you can walk around because that could be “accompanied walking” (like with a friend or partner). The second most obvious is CFS/ME or fibro - both have wheelchair users, however there the implication is that by being in the chair you either fatigue often or are fatigued at the time - which could lead to more problems like instructors asking if you need extra time, etc.

Since you are in a chair, you may find (I would be VERY surprised if you didn’t) that many people will want to know why you are in a chair, and ask, even when it is not really polite. Or just assume you are SCI and say things like, “When did the car accident happen?”

As to your concern about showing up walking and not being able to wheel. Sometimes, particularly with organs like thyroids, there is so much flux that in an autoimmune attack, there will be remission periods. So, for example, your thyroid might cause hypotension (low blood pressure on standing which makes you pass out), then get better, then not. Often doctors will wait a few years to see if the body will correct itself before doing radiation or a removal operation.

Neurological diseases all have their own specific progression, which is why I wouldn’t recommend neurological as a story if possible unless you want to do a lot of research. Neuro, like MS, does go into remission, but often doesn’t go away, which means that you are stuck with that story forever. Just a point.

Most people don’t know enough about different conditions to do more than think spinal cord injury or not. Another one you might consider is B12 deficiency, as it develops into PA, which causes everything under the sun including neuro degeneration.

I am not trying to give a how to book but since most people would not be able to understand BIID, an explaination they could understand might be easier for you and them (since it is hardly fair if you are under medical advice for using a chair at school for people to be predjudiced about it because they don’t understand what your BIID is). If you want more detailed medical information I guess you could email me.

I’d like to echo Beth’s comment and say that your openness and bravery has helped me to understand and process my feelings. What you are doing is hard, but necessary for your well being, and requires two fold bravery. First you must be brave enough to actually go through with it, but also brave enough to open up and share your feelings with us. For all of this I thank you.

Generally when I have problems with anxieties such as those you are experiencing I imagine those fears occurring and practice how I will react in those scenarios. It sounds as though you anxieties are rather extreme though if you have been to the hospital twice already. While I will admit this is not the best tactic for dealing with such fears it has helped me to act much more calmly on the rare occasion that my anxieties are realized.

As far as cover stories go, you might also be able to claim a spinal infection as cause for your injury, but I don’t know enough about the condition to say much more than that.

I suffered from the “What if people see me walking?” anxiety thing. Since I had moved into a different city away from my parents I could afford to introduce the people who know me well to the fact that I use a wheelchair. The ones who knew my family etc were just told it was a degenerative problem and I found it easier to wheel sometimes, that gave me the wiggle room to walk or be seen walking occasionally.

I am a BIID sufferer and have been for about 6 years I am 16 now I have been going to a psycologist for about 6 years but have’nt said anything the only ones I have tolled was my family but they go on like every other day. At this point i don’t know what to do. I dream about my left arm being amputated from the elbow down and think about daily, I can imagine feeling it not there draw pictures, and at my school I see a amputee and my manipulation of my left arm being gone grows. So what should I do?

talk to your psychologist about it. Get them to have a look at http://biid-info.org There is information out there for professionals who don’t understand. But they can’t help you if they don’t have the full picture. Just don’t tell them that you’re going to do anything to hurt yourself!

From what I have read, BIID seems to be me to be a disability. So if you are using a chair because of the BIID, then you are using a chair because of a disability. So you could just tell people that you use a chair because of your disability. It isn’t their business as to what your disability is. And if they see you walking, just tell them that you don’t need the chair sometimes.

I have Asperger’s Syndrome(AS), and my therapist generally tells his AS clients to not tell anyone they have AS. As far as he is concerned it’s personal medical info that no one has to know about. In fact, during one of the Aspergers groups he runs, he held out his medic alter tag. He said “I’ve known some of you for a few years and I haven’t told any of you what medical conditions I have, because it’s none of your business”

As far as I am concerned BIID is a perfectly valid reason for using a chair. So you don’t need to justify to anyone why you use a chair. If anyone asks just say. “I don’t want to talk about it”

Jennifer

Hi Claire,

thank you for your openness, letting us feel with you.

And Beth, thank you for your remarks which seem very helpful to me.
One sentence of yours made me think a bit; you wrote:

“sometimes the nervous system stops working for non-controllable traumatic reasons - like after a rape for example. The person isn’t ‘faking’ but the mind has just shut that body part down and until it decides to, it will stay shut down (this has nothing to do with the conscious control of the person themselves).”

The sufferers of a palsy normally don’t remember the psychical injury which lead to the shut down of their control. That makes it so difficult. Maybe we BIID sufferers/transabled people have a similar problem? Maybe we also have suffered an injury, a shock, something like that, but didn’t react as extremely as those whose limbs are lamed, just with the desire to lose them, a certain alienation?

Much of what you, Claire, wrote, reminds me of the days of my coming-out as a gay man. What will people think? What if my parents find out?

After my coming-out I showed that I am gay. I was not proud of it, but proud of being able to show it.

But it is worse with BIID, because gay people are accepted, whereas BIID really could make you an outsider and very lonely, if not threatened by those who think they must keep their neighborhood “clean”.

We should again and again tell ourselves that we didn’t chose this condition and that it is not evil and that if God exists he certainly loves us like he loves all of his creatures. We might be forced to lie to people (which is not easy and hurts ourselves more than those whom we are lying to), but let’s not attack and condemn ourselves.

My therapist said to me: If you see somebody with an obvious disability, will you attack him or feel compassion? You have a disability that is not to be seen, but you must be compassionate to yourself.

Let’s try that.

Best wishes
Phil