Fifteen years on

'Can I have my children tested?’ I managed to mumble those words. The doctor had just given me my HIV test results; I was positive. My mind was racing, pictures of the ‘thinning’ bodies I saw back home in Uganda were flashing in my head, the pictures of death were too vivid! I stared blankly into space, holding on tightly to my children. Grateful that at least I was a mother, my concern now was with their health; surely, they must be positive! I could not imagine that it was possible to have healthy children after a positive diagnosis. I could hear the doctor talking, ‘there is no point in getting your children tested now because they are not yet five years old’. I did not shed a tear; in shock, I left the hospital and headed home like a zombie to break the news to my husband. He was my only source of support at the time. The stigma was very high in my community and since I did not have any physical symptoms, I did not tell anyone outside the medical team; it became the big secret in my life.

I was not given any pre-test counselling and I had to wait two weeks to see a counsellor even after diagnosis! There was no specialist HIV clinic, and I used to see a consultant in the chest clinic. Appointments were characterised by a long wait since there were no specific, allocated times, and a ten-minute session with the consultant, if you were lucky. Just as well, because all he ever did was let me know my CD4 count, then send me off for more blood tests; the dreaded lab forms with a big red sign in the middle and the words ‘highly infectious’. I remember sneaking around the hospital corridors with my form folded until I got to the blood test department where you could see the nurses’ discomfort from their body language; or was I projecting my own fear and discomfort onto others? I remember vividly that with every appointment my CD4 was dwindling and with it my life. I didn’t understand how it worked, but the steady drop, was an indication I was facing imminent death.

Close to breaking point, I was saved by the National AIDS Helpline service who directed me to the ACE project. The organisation has since closed down, but the wonderful people I met there were my salvation. This was my first opportunity to meet other people like me, HIV positive. The majority were gay men, one of whom in particular inspired me to carry on, and who had been positive for 14 years. Even though my GP had given me leaflets about Positively UK, I didn’t have the courage to contact them; besides at the time they were located in Sebastian Street which seemed so far away from Croydon, especially with two young children. Little did I know that at the time there was travel assistance!

My life changed dramatically the day I finally braved the doors of Positively UK. I can’t believe it’s almost 15 years since my diagnosis! A lot has changed, more complacency, increased diagnoses, treatment options, but the stigma remains.

I believe behind every cloud is a silver lining. Today I can say that my diagnosis was a blessing in disguise because it gave me the opportunity to understand the value of life and to search for my true self. I couldn’t agree more with Rhonda Britten in Fearless Leaving: ‘Adversity has the effect of eliciting talents that would otherwise have lain dormant.’ The struggle continues, but I now know there is more to me than the HIV.

This story was first published on the Positively UK website. Thanks to Positively UK for giving permission to reproduce it here.

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