There’s a saying … behind this face is a thousand stories. Well, yes – but there’s only one story that’s difficult to share. Married man, two kids and a dog. Surely his illness has to be something to do with the colon?
Things gradually got worse and I struggled to work until finally I collapsed with pneumonia. The pain was unbearable and after two weeks in hospital a trainee doctor suggested a HIV test. Why would that be necessary? Well my finger and toe nails had fallen out, my hair had thinned and the weight loss was incredible. I hadn’t been able to taste food for months due to the fungus in my mouth.
Some ten years later, that conversation is one I didn’t think I would be around long enough to remember. Leg ulcers started to form and my weight fell to eight stone – but an AIDS diagnosis was still a shock.
Almost overnight I had aged twenty years. I could only walk short distances and found it difficult to bend. Had anyone told me how difficult the journey ahead was to be I would never have believed it. Yes there are anti-retrovirals to control the HIV, but trying to live and work with the side-effects is extremely difficult. With kids in school who had aspirations of studying at university, it was crucial I worked.
The medication caused many horrible side effects and totally changed the shape of my body. I have tried most of the drugs available in the hope of finding ones I can tolerate. Just as my health started to improve, I ended up in hospital with kidney stones caused by the drugs. My status was a secret only shared with my partner, and going into hospital was another challenge I had not prepared for.
“Tell me: was it recreational or transfusional?” asked a Consultant. “Is this the gentleman with self-inflicted kidney stones? Put him at the end of the theatre list.” When my GP eventually found out, he said that he was very sorry and that I was the only patient in the practice with HIV. “We do not have that sort of thing here!”
If only I had been tested sooner and not waited until my CD4 was eleven I could have made my life so much easier.
Things got so bad I was struggling to work. I knew if I disclosed I would lose my job but everyone at the hospital told me that wasn’t the case anymore – I had Disability Rights. Indeed, within four weeks of telling my boss they decided to restructure the business … and only one person was displaced. You’ve guessed it: the longest-serving guy who consistently exceeded target. When challenged, HR admitted that someone with my illness could not possibly hold down a senior position.
So I got another job, taking a big pay cut. The isolation I felt was of my own making and given what happened last time I decided not to disclose my status. Every time I had disclosed my status previously I had been knocked back. Then it happened again.
The System Administrator in work accessed my computer and found that I had been checking out what support I could access, whereupon things took a turn for the worse. I was given my own mug. No one would wash my cup or make me a drink at work. I could live with that, but then the boss started commenting and I just couldn’t cope. Yes, you have rights with HIV – but I did not want the conflict and loss of privacy it would take to challenge these behaviours. Another job went down the drain.
The doctors treat the virus, but having to cope mentally with the stigma surrounding HIV resulted in acute depression. Would anyone in their right mind choose to live their life like this when getting tested much sooner could have made things so different? By the time I was diagnosed my immune system was so severely compromised that it has taken just over ten years to get anywhere near where I need it to be. But my life has slipped by.
People say what do you regret the most? That’s easy to answer. Not getting tested sooner. When people say they’d rather not know they are not making an informed choice.
If sharing my story makes just one person get tested then it has been worthwhile. Thank you for making time to read my message.