YOU ARE HERE:
Recently diagnosed?
Taking an HIV test and learning that you are HIV-positive can be a frightening and upsetting experience. Though it might be difficult to appreciate it at the time, finding out that you are positive can mean that you are in a position to take action to improve your health and extend the length of your life.
You now have the opportunity to be receive regular medical monitoring and, if appropriate, be treated with new anti-HIV drugs or medicine to treat and prevent infections and illnesses seen in people with HIV. The later you are diagnosed with HIV, the more damage the virus will have been able to do to your immune system, meaning that it can be harder for antiretroviral drugs to work and infections can be harder to cure or control.
On the day of diagnosis
Most HIV testing centres offer both pre and post test counselling. If you feel that you need more support, ask at your clinic where this might be available. Many HIV treatment centres offer face-to-face counselling, as do some HIV organisations. Telephone helplines, such as the Terrence Higgins Trust Direct Helpline, on 0845 122 1200 or the National Sexual Health Helpline on 0800 567 123 are also available.
Making decisions
The time of your diagnosis can be a difficult time to be making decisions about the future. Such decisions might include anything from starting anti-HIV treatments to telling close family or friends about your diagnosis.
Most people do not begin treatments at this stage. Instead it is more likely that you will begin regular monitoring of your health to give both your doctor and you a better understanding of how your body is coping with HIV and how best to respond to it. If your HIV disease is more advanced, then taking HIV treatments, or other drugs, could be a more pressing issue; particularly if you are currently unwell. You will not have to make a snap decision on treatments in the clinic on the day of your diagnosis and it is likely that you will be offered a follow-up appointment a few days or weeks later to talk through your possible treatment options.
Medical care
It’s important that you feel comfortable with our doctor and clinic. You are under no obligation to receive your HIV care at the clinic or hospital where you were diagnosed. You are entitled to use any HIV clinic in the country, not just the one of the area you live in.
Some people prefer large clinics which treat many people with HIV, whilst others prefer smaller, less busy clinics. However, it’s generally agreed that being cared for by a doctor who is experienced in managing HIV disease is very important.
Once you’ve chosen your clinic, you’ll probably be asked to come every three months or so for a check-up. At these appointments, you’ll have an opportunity to discuss your health with your doctor, and to have monitoring tests, particularly a CD4-count, to see the condition of your immune system, and a viral load test, to see how much HIV there is your body. These tests are used to predict your risk of developing illness in the future and to help you think about when to start anti-HIV drugs.
If you begin treatment, are unwell because of HIV, or join a clinical trial, you may be asked to visit the clinic for more frequent appointments.
Learning about HIV
At first you may come across lots of medical terms you don’t understand - don’t worry there are lots of good sources of information which you may pursue at your own pace. Always ask your doctor to explain anything you don’t understand. Other staff in the clinic, such as nurses and pharmacists will also be able to explain things. Always ask for written information if you are left with questions or uncertainties, and you might find NAM's book Living with HIV, other factsheets in this series, or NAM’s easy-to-read booklet series, Information for people who are HIV-positive, a good place to start. Call 020 7840 0050 for copies, which are free of charge for people affected by HIV. Other HIV organisations also produce information which you may find useful.
The internet can also be a good source of information on HIV. A good place to start is aidsmap.com, NAM’s website, which has lots of information about all aspects of HIV including contact details for local HIV services and a good links page.
Disclosure
Take time to think about who and why you are going to tell you are HIV-positive. Also think about how you are going to do it. What kind of support do you want from them? Can you anticipate their best or worst reaction? Begin with telling those who are closest to you and who will be the most supportive, and consider waiting to tell anybody, such as an employers, whose reaction may not be helpful.
Meeting people
Some people find meeting other people with HIV a supportive experience, although others do not find this helpful or supportive. If there’s an HIV centre locally, it may have a support group for people who have been recently diagnosed where people in a similar situation to you can share their thoughts and experiences. Don’t feel that you have to attend a group if you do not feel comfortable with it, and don’t think that you have made a mistake if you have reacted to your diagnosis in a different way to somebody else. There is no right or wrong way to finding out you are HIV-positive, but it is important that you try to start to take action and get information which could mean that you stay healthier and live for longer.
Living with HIV
In late 2004 NAM published Living with HIV, an introduction to the key aspects of life with HIV. It is primarily targeted at a UK readership and includes first-hand testimonies from people living with HIV.
It is available free of charge to people affected by HIV. To obtain a copy call 020 7840 0050, or email info@nam.org.uk. It is also available on aidsmap.com.