27 July 2007

Mal élevés

I'm sure this will seem a bit of a mood swing from my previous entry, but I'm here to rant today. And I have struggled with trying to find a new style to fit this into my 'Stylin' Fridays' theme, but that has only led to the two week delay in continuing with my health discussion.

So today's topic is the reactions I have had to deal with to the changes in my body shape after almost a decade of anti-retroviral treatment. Don't get me wrong: I do think that there are other elements to be taken into consideration. I have aged and my metabolism has slowed. I quit smoking (even though I don't think I compensated by eating, I hear there is a metabolic impact of quitting smoking as well). I am less active. This last one is complex in itself. I often come home from work and am so exhausted that I just fall asleep, but I know (even from experience) that if I could integrate regular exercise into my life this would eventually give me more energy. I also have psoriatic arthritis in my hands and feet, which can make a number of traditional exercise activities too difficult. Before suggesting anything like a gym or a pool, I would recommend reading what follows.

"You've gained weight." This is what I got a couple of times at the gay and lesbian country dance club I used to go to. I did manage to counter with "I can't believe that you think you can say that to someone" on one occasion, but even if that made the person feel bad about himself, it didn't make me feel any better. As this wasn't the kind of experience I wanted to have in my leisure activities, I just stopped going. Of course, I have come up with a much snappier comeback since: "Do you think I don't have a mirror, or are you just trying to make me feel good?"

"You must be in love…someone has been feeding you." This one soured my experience of visitors' day at Camp Positive, a summer camp in the country for people living with HIV.

"Well that (pointing at my stomach) is not from the drugs." This from a woman who has been a big activist with the Comité Lipo-Action!, our group advocating for coverage of reparatory treatments for lipodystrophy, or, to be more accurate, for facial lipoatrophy, as they don't seem to be thinking very much about anything other than the (facial) cheeks.

This last one is particularly galling. Here is a group which began with a cry of "Our doctors aren't listening to us!" and has pursued a battle to repair the damage that various anti-retroviral medications have done to their faces. Why? 'Because it is making HIV visible again, we are becoming identifiable by our faces.'

Pardon me if I am much less concerned about revealing my HIV status, as I have done so on any number of occasions in almost every form of media available. I actually do respect every person's right to disclose or not disclose her/his status. But I also remember the things my mother told me growing up about how to talk to people and how to treat them. Do you at one moment decry the lack of understanding you are getting from medical professionals and then turn around and deny the experiences of others? Do you say things to people that cannot possibly have any effect other than to make them feel bad?

Not where I come from.

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