Newly diagnosed


Being told you have HIV can at first seem like it’s too much to deal with, but it’s not. Try to relax and take things slowly. This will help you work out how you’re feeling and how you can cope during the first few weeks.

There’s no need to panic. Having HIV doesn’t mean you’re going to die tomorrow, next year, ten years from now or even twenty. Since the development of new treatments that have been available in the UK since 1996, the life expectancy of people with HIV is much longer than it used to be, and most gay men don’t need to start treatment until several years after they have been infected [1].

In the 1980s and early 1990s, people diagnosed with HIV were considered to have a terminal illness. These days, although there is still no cure, HIV is considered a chronic (long-term) manageable condition. You can be HIV positive and not have AIDS. In fact, today most people with HIV in the UK do not have AIDS and can look forward to a long and relatively healthy life.

"When I was newly diagnosed, all I could think about was ‘am I going to die soon?’ I went to my first appointment with a doctor at the clinic and I didn’t even have to open my mouth before he said, ‘This isn’t a death sentence.’ I breathed a sigh of relief as he told me that my condition was in most cases very manageable, and that I shouldn’t stop paying into my pension fund. (Martin, 39)"

Coming to terms with having HIV is a gradual process. Just talking to someone about what you are feeling can help. You may want to talk to a friend you can trust, and if you have a friend who is both trustworthy and HIV-positive, even better. If you are not ready to talk to your friends about your diagnosis, book an appointment with the health adviser at the clinic where you were diagnosed.

"When I was diagnosed, and for at least 9 months after, I felt completely stupid that I had allowed myself to become HIV-positive. I felt really embarrassed that after 17 years of practicing safer sex, one night of unsafe sex had led to me contracting the virus. I used to really berate myself and found it really affected my sex drive for a while. But the feeling began to fade and I stopped being so hard on myself. Yes, I was careless, but I've let the guilt go. I suppose I've forgiven myself. The past is the past and you can't change it. Getting on with life is too important." (Martin, 39)

If you are worried that people will be able to tell you have HIV looking at you, remember that there’s no big flashing sign above your head saying ‘I’m HIV positive’. It’s highly unlikely that people will know that you have HIV unless you tell them.

However, you may have heard about a side effect of certain anti-HIV drugs known as lipodystrophy which can cause fat redistribution around the body. If you have just been diagnosed with HIV, there’s no chance you’ll have this side effect. You can read more about this in the section on side effects in HIV treatment.

"When I got my diagnosis, I was convinced that people on the tube on my way home from the clinic could tell. I stood at the end of the carriage all the way home because I didn’t want anyone to sit next to me and say anything. Of course I looked no different from how I looked before my diagnosis and eventually I calmed down. Nobody could tell just from looking at me that I was HIV-positive.” (Steve, 24)

There’s no need for you to try to deal with your diagnosis on your own. If you are finding it hard to cope then it’s a good idea to talk to a professional counsellor. For help finding a counselling service that is suitable for you, call THT Direct on 0808 802 1221. It can be over a month before you see a counsellor, so the sooner you make the call the better. It may even be a good idea to talk to someone about what your diagnosis means for you even if you aren’t feeling overwhelmed by it at the moment.

You will also find contact details for a whole range of different advice and support services in the section on Help & Support.

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