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Kevin's Story- learning to live with lipodystrophy

I guess the worst thing that has happened have been things that people have physically done to me. I enjoy going out in summer in a singlet. Now, now matter how much I hold in my stomach it still juts out there. A couple of times I have gone out to a gay bar and people have come up to me and actually pushed my stomach in!

Kevin started noticing body changes happening about two years ago after starting on treatment regimes involving protease inhibitors, a year before that. 'I have no doubt that proteases caused the changes for me. They caused the inflated tummy and the sunken cheeks. I know there was a pronounced "AIDS look" which was prevalent in the late 80s, early 90s: the gauntness caused by malnutrition which showed in people's loss of weight in the face and in the AZT arse and so on. But this is different - it is a redistribution of weight, particularly to the tummy and it's what I'm conscious of the most now.


Attention to Diet and Exercise
I've tried really hard to limit it. I get up every morning and do 150 crunches, push-ups and squats. I go to the HIV Circuit class run by the Alfred and all the exercise has made a difference. My stomach is tighter although it's still there, as a pronounced hump across my abdomen. For the amount of exercise I'm doing I really shouldn't have any fat at all.
I'm also careful about my diet. My cholesterol and blood sugar results are slightly elevated so I'm watching what I eat to make sure I don't develop the conditions that we know can come with lipodystrophy. I avoid sweet things now. I eat a lot of fruit and if I go to the pantry for a snack I'm more likely to grab a handful of dried apricots than a sweet biscuit. It's a treat for me to have desserts with a meal these days I'd only go through a tub of ice-cream a month now. I know when I have it because I get a real sugar rush. I think you have to try to limit your chances of developing hyperglycaemia, diabetes or high cholesterol.

Not that I'm suggesting that people should cut down on their food intake - just to try to eat less junk foods. I have got a great appetite these days, a real hunger for food which wasn't present before the proteases. I eat really well now and have put on 12-15 kilos in the last twelve months. Two years ago all my trousers were baggy in the bum or the legs because of the weight loss I experienced particularly after the HIV related illness I'd been through. Now all my clothes are tight and I feel pretty good. It's a shame about that tummy, though!

I'm still hesitant about going swimming. I used to go to the pool every morning or to the beach. Last summer I didn't go to the beach at all and to the pool only a couple of times when it was really hot - all because of the staring looks you get.

Self-conscious about Sex

As for sex I haven't had any for three years. It's partly because I wasn't interested, particularly around the time that I was being treated for the HIV encephalitis. To treat it I had to have a portcatheter in my chest for the daily infusions of Foscarnet. I was extremely conscious of that port and how that might turn off a sexual partner.
Now that my libido is back, I do think about sex more although the routine of going out and trying to pick someone up seems a bit too complicated to try sometimes. I mean, if I went out and was lucky enough to pick up, would I have my pills with me for the 11 pm and 7 am doses? Even if they came back to my place I'm not going to be able to hide anything because the pills are there on my bedside table and they would be there for the 7 am alarm when I have to take my Indinavir!

I guess if I was to meet a positive partner they might understand the experience better. Once I thought I wouldn't want to have a positive partner because of the stress it might put them through if I got sick - or the reverse. Now I think it might be OK. I'm hoping, with the new treatments, that I'll never get as sick as I was again.

I'm really in a much more optimistic frame of mind now. Friends out from LA recently, who hadn't seen me in two to three years, couldn't believe the difference in my appearance. I look so much better, my skin is clearer, I've put on weight all over, including in the face. OK I've still got the tummy and some signs on my face but I'm even confident that they are starting to improve as well. If you add that to feeling better generally, then I guess I'm starting to learn to live with lipodystrophy.


by Kevin

This story has been kindly sent by PLWHA Victoria, Australia. Added to the site September, 1999.

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