Sunday, April 17, 2011

On Being a Medical Geek

I have Asperger Syndrome. One of the hallmark features of Asperger Syndrome is interests that are unusual in intensity or focus. Personally, I'm something of a polymath- I like to learn about everything. I have never been interested in one thing to the exclusion of all other things. But it is clear to anybody who has ever engaged me on certain topics that there are some topics that just get me going. And going and going and going.

I have always been fascinated by disability. Before I was diagnosed with diabetes, I focused more on the ways that disabled people function in society, self-perception, etc. I had already just so happened to have read two nonfiction autobiographies by type 1 diabetes (unfortunately this left me with the misconception that diabetics couldn't have any sugar). After I was diagnosed with diabetes, my fascination with disability very slowly morphed into a more medical fascination.

Being fascinated with disability is all and fine, but it has a major problem. Namely, disability exists only in the context of people. And while disabled people have many different takes on disability- whether they want to be referred to as disabled, a person with a disability, or forget the labels entirely, whether it matters to them or not, whether they are interested in others with their conditions or not, to what extent they see disability as desirable or otherwise, their political views on disability, and their level of education and interest about their conditions- they almost universally do not want to be seen as their disability.
I understand that.

I have taken to heart one of the pieces of advice I read for how to be a good ally / how to react to transgender people. It recommended that allies not ask the person to explain everything- that they not ask voyeuristic questions- but instead do their own research.

For the most part, I am not tempted to ask people rude questions about their medical conditions and/or disabilities. I don't usually make incorrect assumptions, and for most medical conditions, I know enough that I'm not that curious. For instance, when talking to a friend with cerebral palsy, I'll definitely be paying attention if the person talks about something medical- but I feel like I already know enough about cerebral palsy that I have no inclination to steer the topic in that direction. If the person does mention something I find interesting- for instance, one of my friends with cerebral palsy has an implanted pump made my medtronic- I'll comment (Hey, medtronic is a big maker of insulin pumps- do you know if they're connected?), file the information away for later, and then research it myself.

Occasionally, however, I run into a situation where I'm not sure where the boundaries lie. As a general rule, I don't initiate conversations with strangers about their medical issues (although, since I very frequently initiate conversations with strangers, I often do end up learning about their medical issues). The exception to that is if I guess that a person has diabetes- then I'll mention that I'm diabetic and whatever I noticed that makes me think they are too.
Anyways, I also know that even when somebody else initiates the conversation, various things are off limits. In particular- I don't make any comments on sexual function or development, I tend to assume that asking people about if they had behavioral risk factors will offend, and I do my best to avoid judgments.

But sometimes, particularly online but sometimes in person, a person will ask for my medical advice. And if that person has a disease or disability combination that strikes me as very exciting, and especially if I've no prior knowledge of the person, I have a hard time keeping the disease in the perspective of the person. I know that this disease is not a happy occurrence... but I get excited anyways. And the more I think about, the more excited I get. I know I've helped people to understand their situation medically and some people have even told me that my advice has helped them get diagnoses or improved blood sugar control. That helps- but I still have the problem of the glee. I still have the basic problem of not relating to people. Online, I don't think that usually matters too much since people can easily find somebody else's shoulder to cry on- that can't so easily find somebody to translate medicalese and look up the issues they've got. IRL, I'm not so sure. Should I just say, "This is my Asperger's, I'm not good at supporting people," and move on?

The other problem I have with being a medical geek are feelings of guilt and a sense of not belonging. Why? Because among my reactions to being diagnosed with diabetes was that this was really really cool! I was overwhelmed, scared... but excited! Unlike Asperger Syndrome, which is the sort of thing without a really solid definition, and which people sometimes disbelieve me about having (although other times they guess it even when I don't want them to), diabetes is a well defined enough condition that I can prove that I am diabetic. Although I expected people to disbelieve that I had diabetes in the same way that people react to me saying that I have Asperger Syndrome, this has never happened. The most dramatic reaction people have is to comment on my skinniness in relation to the diabetes- they never really object when I say I have diabetes.
Instead, I found, for a long while, myself objecting. I kept having the feeling that I was an imposter. Any one or two day string of low or normal blood sugars would make me anxious and I'd be somewhat relieved when I had a high reading again.
It took years before I stopped expecting somebody to challenge my diabetes (I think mostly it was time that helped but also the extra things I've had in the past few years). I'm wondering as I type if anybody will challenge me on the basis of this post- I'd guess not.

Recently a woman whose child has a combination of medical diagnoses and unexplained symptoms that fascinate me told me that she wished she was me- she wishes she could read and understand the medical literature like I do. I'm not sure how to respond. I'm not sure it's a good thing to wish for. Not that I'm really, at the end of the day, sorry that this is who I am and what I do- out of the various perseverations I might have had, this one at least can be useful. But it's not a little thing. It's not some small facet of who I am. It's something that makes me very very careful about what I say to her. I know too much and too little, at the same time.

1 comment:

Reyna said...

So, I read this yesterday. Had to think on it a bit before commenting. I like this part of you...the "geekiness" on the medical front. It sounds like you don't like this part of you. True?

Yes on "chess" with Joe...we have played while waiting for his concussion to heal. And...the 1 was one of the 40 diagnosed that day (a stat...not sure how accurrate it is).