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Your support options
There are many ways to get emotional support. Don’t be afraid to shop around for what suits you. Your local PLWHA or AIDS Council is a good source of information and contacts for different kinds of support. See links pages for contact details. See also the section on Mental Wellbeing in the Looking after Our Health section.
Peer Support
Peer support means that other people with HIV provide the support. Peer support groups for gay men are relatively easy to find through AIDS Councils, but if you are a woman or heterosexual man, it may be more difficult to access such support. There are groups for heterosexual men and women in some capital cities (See Contacts page).
Counselling
You don’t have to be in a crisis to benefit from counselling. Counselling is usually designed to help you sort through your feelings, identify coping strategies and find ways to move forward. Getting counselling can sometimes prevent a crisis from happening. It is important to shop around for a counsellor whose approach matches what you want. You can usually arrange for a test visit to talk about how they work. Free counselling is often available through AIDS Councils, sexual health centres or hospitals.
PLWHA organisations
People Living With HIV/AIDS (PLWHA) organisations can provide an opportunity for people with HIV/AIDS to work together on issues that are important to them. Support from the people you are working with can be a spin off from working in the organisation. If you don’t have time to help, you can still join and access newsletters, services, information sessions and social events.
Positive Retreats
These are run on an irregular basis by PLWHA organisations, AIDS Councils and groups such as Poz Het. Retreats are an opportunity to get away with a group of other HIV positive people in a comfortable environment and relax, make friends, and get support and information.
Support for families
The Paediatric HIV Service at Sydney Children’s Hospital provides resources and advice on the management of HIV in children nation-wide. For more info call 02 9382 1654. The service co-ordinates Camp Goodtime, an annual national camp for children and families living with HIV/AIDS. The camp gives children and parents an opportunity to meet with other families facing similar situations. For more info about Camp Goodtime call 02 9382 1851.
Mental health programs
AIDS Councils, PLWHA organisations and sexual health centres at times run various programs to support people with depression. Give them a call to find out what’s available or check out their websites.
For more info
Check out our links page for organisations mentioned in this article, or download and read the AFAO resource Taking Care of Yourself. (PDF 447 KB). You will need Adobe Acrobat Reader to download this resource. Reader can be downloaded for free from the Adobe website.
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HIV raises all sorts of issues that we may find hard to deal with and there is nothing to be gained from trying to cope with our feelings in isolation. Needing emotional support doesn’t mean we’ve failed. In this section we talk about where and how we get support.
© AFAO 2003. Links reviewed June 2006.
Your stories
Leo
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.
Stephen
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.
Marie
Camp Good Time is an annual camp for families that are affected by HIV (see Support for families 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.
Tai
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.
Morgan
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.
Daniel
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.
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Your stories
These are stories submitted by our readers. Submit your own story about where and how you get support
Paul
Well being new to HIV as i have only been diagnosed 2 yrs ago and yes i am on meds started not long ago.
I find that i go to groups but being a working person and hopefully to continue working i find that resources are never there for me as they are not open on weekends when i have the time to attend and to meet new people.
And when you do go when available i find that a lot of people are worse of than me and i feel guilty as i am not sick like they are and find we have not much in common.
I also find that my local aids council does not have any idea about living with and working with hiv and it is based for people who are sick or on benifits and not for people like myself.
And i also feel that like everyone with HIV it is hard to date and find someone to share your life with and when you go out to meet people then it comes to now i have to tell them.
I just think that the government and HIV resouces are out of tune with people like myself who are lost in the system until we are to sick to fight and they are there to help then but not with normal living and yes this is just my view and i feel we should be a more honest in what we want.
And why do we not have staff at these places that are like us living with HIV as then they may understand us and our needs better.
Added July 2006
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