What is it really like to live as a Long Term Survivor with HIV?

We're sure you'll agree that's an interesting question.

Most HIV research understandably focuses on HIV medications, however this fails to tell our stories about what it actually means and feels like to live with HIV.

Judy Sagar, a researcher at Leeds University is undertaking a piece of research which aims to hear and record our side of the picture. For the purpose of this study, Judy is now seeking to recruit women and heterosexual men (as gay men have not been slow in coming forward to tell their stories). She's asked us to emphasise that there will be NO questionnaires and that for this study, Long Term Survivor applies to people who have been diagnosed for over 10 years.

If you are interested in finding out more, Judy can be contacted via:
Tel: 07949 311041
judysagar@aol.com
or Ms J M Sagar,
Department of Sociology & Social Policy,
Leeds University,
Leeds LS2 9JT.
All enquiries will be dealt with professionally and in strictest confidence.

More Research...
You may have met Jody Bailey, working around the centre. Jody also works for Keele University and is doing some HIV related research. Jody writes...

"We have all at some time or other read some research project having been completed in London, New York or other distant lands. There's research going on all the time ensuring we all know about the latest transmission rates, information on new and exciting treatments or the benefits of drug compliance. All very helpful, but the research is often very medical and it also seems very far removed from our world in Stoke-on-Trent!!

It was two years ago that as a volunteer, it suddenly occurred to me from attending the Drop-In and listening to those attending that there exists a tremendous amount of uncertainty about the illness and a general lack of understanding about the effect of HIV virus on people's lives. To those of you who are HIV positive, it probably seems common sense, after all you have to cope with HIV everyday, but to others like doctors, nurses, many other health care workers, it is unfamiliar to them. They can only read about HIV in a textbook or rely on the mass media for updates, but they need to know so much more. There isn't much information readily available, which helps them, and others to truly understand what stages positive people go through when trying to continue living their lives. So that's where I come in!

As some of you are aware, I am in the midst of carrying out a local research study which should hold the key to understanding exactly what it is like living and sharing your life with the HIV virus. The study is about local people and their stories of illness; for this is the best way to get the information-from people who have first hand experience. I have completed the first two phases of study: firstly observing at the Centre (people were very tolerant of me and my notebook) and secondly, interviewing a number of people individually and in small groups about their stages of illness. I hope to complete a final phase of interviewing as many people as possible who access the Centre to make sure I give everyone a chance to have their say!

If anyone has any questions or would like to discuss my work with me, please do not hesitate to contact me via the centre"