15 years ago today I was diagnosed with HIV.
Sometimes I feel I have told my story too many times and really there are not many people left to hear it!
I will cut and paste a recent interview I have done and I hope it may be useful to one of the many thousands of people who are receiving their diagnosis today. Hopefully it will help them feel less lonely and frighten then I was.
When you were diagnosed with HIV?
I was diagnosed with HIV in 1997
How did you find out you had HIV? – Who told you?
I had just come back from a beautiful holiday in Senegal, it was an amazing holiday where I studied African dance and soaked the sun on the beaches of Casamance, by the Gambia River. At my return unfortunately I had a very high fever and had to go to hospital with Malaria, after several weeks it looked like my body was struggling to recover and was unceremoniously offered an HIV test. To my shock and horror it came back positive.
How did you feel when you were diagnosed with HIV?
Describing the shock of finding out you have HIV is hard. I thought I was going to die a horrible death. For the first few weeks I couldn’t find the strength to speak to anyone. I was locked in my room crying, lonely, scared and full of shame. How could such a horrible disease happen to me? Why me?
How has it impacted on your daily life?
I think the hardest thing was dealing with the psychological impact. The sense of shame, the fear of judgment from others, locked me into secrecy and silence. Most of my friends were getting married and having babies. I thought I was just going to die a horrible and shameful death. I felt totally isolated, nobody around me could really understand what I was going through. I went through the deepest depression of my life.
Who did you turn to for support?
It took me a long time to look for proper support. I disclosed to some close friends, but I felt they didn’t have really any idea of what I was going through, even if they were sympathetic. My self-esteem and self-confidence were so low. Finally I was told of a support group for women with HIV at Positively UK. For me that was a turning point. I met some amazing women who had gone through terrible experiences, but been able to overcome them. Seeing their strength enabled me to discover my own.
What personal message would you give to a newly diagnosed person?
It’s a cliché: but what doesn’t kill us makes us stronger. HIV is only a virus, it is an health condition, like many others. Let’s not let it limit us, with support, treatment and care we can all live our lives with dignity and achieve our dreams. We can work, have families and healthy babies.
What messages of support would you give to someone newly diagnosed?
When we are newly diagnosed it is important to look for support, to talk to other people who have gone through the same experiences and have come to the other end. Try not to isolate ourselves. If possible we should try to meet other people with HIV, find role models, talk about what we are going through. I believe HIV can be an opportunity for us to look at our lives with more attention and really focus on what is meaningful and what brings us joy.
How do you believe HIV awareness, diagnosis and treatment should be improved?
Stigma and negative attitudes are what makes living with HIV so hard. I wish there was much more public awareness and that everybody realised that somebody with HIV is just like you and me. HIV is in our communities and we all have a role to play to ensure that those of us with HIV are treated with respect and love.
How have medications impacted your quality of life
If I didn’t have access to free high quality health care, including medication, I would be dead now. HIV drugs have enabled me to live a normal life: work, travel, have fun etc. It was hard at the beginning because the first generation of medications were really toxic. But they have improved enormously over the years, and I am really grateful for that. The evidence that medication also really reduces my risk of passing HIV to another person is also very important to me. I wish more people knew about it, and could see that somebody with HIV is not a threat. What worry me is that millions of people still do not have access to them in the world, and that in the present economic climate expanding treatment in low income countries doesn’t seem to be a priority anymore.
Why it is important to take medications on time?
When I take medication on time I make sure the virus stays so low in my blood that it is ‘undetectable’ in the blood test. If I miss a dose the virus will start replicating again and could even become resistant to the drugs I am taking. When the virus is so low in my body I am much less likely to pass HIV. This is why HIV positive women can have HIV negative babies 99% of the time! This must be one of the greatest advances in medication of my generation!
What makes it manageable to take your medication?
My medications are only once a day and I do not have any side effects, I am really lucky. We have gone a long way from when I started to take treatment and I had to swallow 18 pills a day. The side effects were horrific and I thought my body was mutating! It is really incredible how much has been achieved pharmacologically in just 15 years. Now we all have to work together to make treatment affordable and easy to access for every woman, man or child who needs it in the world.