That anxious look I get from loved ones is very hard to take, and all I want to do is reassure them that everything will be all right. Complicated, isn’t it?!
When I was first diagnosed with HIV, I felt very isolated. I had a gay friend with AIDS but I did not tell him about my diagnosis as I didn’t want to worry him. He was very ill at the time and I felt my health was OK – the last thing I wanted to do was give him something else to cope with, so I looked after him and forgot about my own HIV.
The few friends I told at the time were shocked and very concerned about my health. Again, I did not want to worry them, so I did not discuss what I was going through. I became aware that I could no longer whinge about any aches, pains, colds or any other ‘normal, everyday maladies’, because to them it represented something far more serious.
I coped for a while by just being in complete denial, but I began to feel isolated and longed to be able to speak freely about my situation, longed to meet other women in the same situation as myself.
I met other positive women for the first time at a support group. It made an enormous difference, the relief of being able to talk, knowing they were feeling the same things, made me feel ‘normal’ for the first time in ages. I went on to run support groups and discovered, again and again, that no matter what the cultural differences might be, we all had basically the same problems – the main one being how to cope with our HIV status.
Then I started to realise that my (HIV-negative) friends were treating me differently. I had always offered a shoulder to any one of them who needed it. But what I began to find was that even if I could see that they were going through a difficult time, they did not seem to want to talk to me about it. Over dinner one night, a good girlfriend, having consumed rather too much alcohol, informed me that she did not feel she could confide her problems to me as she felt mine were so much bigger than hers...BINGO...I understood what was going on.
I tried to tell my friends that their problems were relevant and of course I still wanted to be confided in and asked for friendly advice. Whenever I said this, I was always greeted with 'but I don’t want to worry you'. Luckily, as the years have gone by they have become used to my HIV, and our relationships carry on as normal. I never did want to be treated differently. Having said that though, I have learned to never complain about any illness unless I know it is really serious... and even then I play it down.
My circle of HIV-positive friends grew and I felt I had a great balance. Every now and then, I would meet up with my peers, have a few drinks and be able to talk about anything related to our status.
Since moving to the country, I have had little contact with my HIV-positive friends. One night last week I met up with a group of friends, one of whom was positive. It felt like manna from heaven, and without realising it, he and I immediately fell into ‘HIV speak’ and forgot about everyone else at the table – we could talk about our ‘aches and pains’ and not worry each other.
I think when you are suffering from a life-threatening illness you do not want to tell people about your everyday symptoms. I have realised that it is a luxury for healthy people to complain about their health. The usual advice to them is along the lines of: “Oh don’t worry, it is only a cold/flu, everyone’s going down with it, have some Lemsip, you’ll be fine.” The only people who seem able to say this to me are others in the same situation... who are also HIV-positive.
So to any healthy hypochondriacs reading this, do not feel guilty, you have a luxury I really miss. To moan and not be taken seriously... yes, please.
This first appeared in issue 87 of Positive Nation, February 2003. Many thanks to both Caroline and Positive Nation for giving permission to reproduce it.
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