Support is absolutely essential. My sources of support have been my partner, my friends and my dog. When my partner died, my friends were wonderful, but I always had to come home to an empty house. Having a dog there made home coming much more bearable.
I went through a stage where I didn’t see the value of going to a counsellor. I thought I could deal with it myself. I have learnt differently since then. I have learnt how important and how useful it is to talk to people about things. Counsellors and psychologists or psychiatrists have the knack of gently nudging you in a different direction towards a path that you perhaps wouldn’t have thought of. Counselling has been a great help for me coping emotionally with grief, with the lipodystrophy and with making changes.
I wish that I was not positive, but you can’t do anything about that. It is sort of a trick to turn it into a positive experience.
Some of the day-to-day, normal stuff I find too hard – I think that’s partly because of the medication. I don’t think I’m doing that well overall, but I know I’m working at it. I guess my problem is I just don’t have the courage in myself. I don’t think I’m good enough because I’ve got such low income at the moment and my place is in an utter mess.
One thing which is doing me good is that I’m trying to do activities like art courses. The local Council has put on a couple of classes over the last couple of years and I’ve been in all of them. I’ve had a few shows because of that. I’ve started going to a dancing class at the hospital.
Camp Good Time is an annual camp for families that are affected by HIV (see Your Support Options below). The camp is part of my survival mechanism and a support system for my family. In the beginning, Camp Goodtime was a way for my partner and my daughter to meet people, so that if I was not around, they would have support from people who know what we’ve been through. Now that I’m still here and have another child, it’s a place that we can go to where it’s okay to not have secrets, not have our barriers up a lot of the time.
It’s a fantastically safe place for the kids and the parents to talk about their experiences and to form friendships and support networks. A lot of families come from small states, where there aren’t as many positive families, or from country towns where they can’t be open about their status.
It’s changed a lot over the years. When I first went in 1997 there were a lot of sick children and parents, and now most people are looking robust and healthy and full of energy. There’s a lot more families from other cultures now: African families, Asian families. There are different age groups. I think the youngest baby at this camp was three months old and the oldest positive child was 16.
The early 90s were very, very bad for me. I did not reach out for support very much. I think I am quite strong in myself and I’ve been able to somehow think it through. I noticed a lot of people were going for support groups whereas I didn’t. Quite often I was in denial and in fact for me that was pretty good really. I believed that I was going to be one of that 10 — 20 percent who is never going to progress [to AIDS]. Just believing it kept me going for quite a long time.
Having said that, I did see counsellors and psychologists for about ten years. Then I got sick in 1995 and was in hospital. I was very depressed and they put me onto a psychiatrist. I stopped seeing him about 18 months ago, because I don’t feel I need to.
I recently came to realize that I have an introverted personality. About 25% of people are introverted and 75% are extroverted. Introverted people, like me, gain their strength from within themselves whereas extroverted people gain their strength from the support of other people. I think it was this introversion within me that helped me to survive.
I’ve just been to a retreat. It was a really nice way of getting involved with a whole bunch of HIV positive men and trying to suss things out. I found it was not so scary or depressing or anything like that. I already knew quite a few guys participating in the retreat so that made it a lot easier, there were friendly faces that I knew and every one else was friendly and relaxed and it was just a really good time. Together with that I also got to do these workshops and was able to ask questions and have discussions. It is good to meet a whole range of people, infected differently and over different periods of time.
I would be more hesitant about getting involved with groups where I live, I don’t want everyone to know. I don’t want to have people looking like they are worried or anything like that, I just don’t want to be a victim, so I am trying to be careful about not victimising myself.
I don’t think panicking really helps. I’ve met a few people that have really been terribly freaked out by it. It is really a difficult thing, it affects people in different ways. I am grateful about that I had friends that I could be really open and honest with, who I could approach immediately and not have any fear of being rejected or dismissed. If you don’t have that there are a lot of support groups out there where you can find support.
It took me six months to really start accessing resources. My initial attempt to reach out was not great and I did not get the information I needed. It was probably about six months before I made another attempt and that was because a friend told me about a positive retreat.
Meeting that network of other positive people really made the difference. I wish I had done that a lot earlier to get that support from people that have gone through similar things and who understand the feelings. It was good to hear other people’s stories and to not get wound up in the feeling that every story is a bad story. People are doing fine.