Saturday, August 17th, 2013 in Personal Stories - Men
THE EARLY YEARS
I, like many others, first heard of HIV round about 1990 when I learned of a fatal illness, which appeared to be affecting gay men in the US, HIV/AIDS. I felt relieved that I had an awareness of how to take appropriate precautions to protect myself.
However in 2004, having suffered repeated occurrences of mouth ulcers, I was advised to have an HIV test. By that stage it was known that people had died of AIDS whilst others had been diagnosed as HIV positive and survived for many years. It seemed that living with HIV had become a part of being gay and it seemed to have created a tremendous solidarity within the gay community.
Before having the test, people usually had to have counselling to assess their mental stability to deal with a positive result. But because of my circumstances I did not have this, however I felt confident that the result would be negative. I remember sitting in the waiting room of the clinic waiting for the Charge Nurse to call me in and give me the result. I so much wanted to get up and walk out, as I was sure I was wasting their time, but something held me there. The Charge Nurse came out and called me in. I followed her to the consultation room and when I sat on the chair to hear the result, she turned to me and asked what I expected the result to be. I replied without hesitation “negative”. She looked at me and very calmly said, “the result has come back positive”. I broke into a sweat, which quickly turned to ice and the only words which went through my head were “Oh my God, it can’t be me”. As I had previously worked at the hospital and was known by many members of staff, she asked if I wanted her to inform the consultant in charge of the Clinic and whom I had previously worked for as a PA or whether I wanted to attend a different Clinic. I knew that the Consultant was a world authority in HIV/AIDS and said that I would like her to be informed.
I was then introduced to Robert, the sexual health adviser. He spoke to me at great length, telling me all about the current medications and how things had moved on since the early years. I felt numb with what he told me and still felt totally unconvinced that the result was positive. I had to give more blood for testing and had to go back the following day for further results.
In the meantime the Charge Nurse had informed the Consultant and before I had even got home from the clinic, she had rung me on my mobile to suggest that I see her the following day. I realised how little I truly knew about HIV that day!
In 2004 when I was diagnosed I started immediately on anti-retroviral treatment. This intake of medication into my body was difficult to deal with initially and for the first time I really felt ill and really knew that I had HIV/AIDS. Although outwardly I appeared to be healthy, I knew that inside me was a virulent virus eroding my immune system. I was on tablets called Combivir and Sustiva. One of the drugs in Combivir is called Abacavir and in some people this can react badly with their liver causing liver failure. Although, I was fortunate in that I did not have this reaction to the drug, I began to suffer from peripheral neuropathy, a numbing sensation in the extremities of the body, also related to Abacavir. I then started on another combination called Sustiva, Tenofovir and 3TC. This proved to be successful and on this treatment, my viral load started to drop and my CD4 count started to rise.
MY LIFE TODAY
Almost ten years on my life is very different. Sometimes I look in the mirror and I don’t recognise the guy on the other side but I still like him. I am now on Atripla and I take one tablet every night and will do so for the rest of my life, unless a cure is found. I have to attend hospital every four months which involves taking up to a half day off work. During this time I have to give blood and have routine screening with a nurse. I then see my HIV consultant to discuss any problems I may have and then phone a few days later to get the results of the blood tests. The blood tests are for: CD4 count, viral load, haemoglobin, kidney and liver functions, pancreas function, glucose, cholesterol and lactic acid levels. My CD4 count is now just below 600, which is acceptable, whilst my viral load is classified as undetectable. This means that it is less than 50,000 and therefore considered dormant. I still suffer with some opportunistic illnesses, but these are manageable and similar to anyone who is HIV negative.
HIV is no longer “flavour of the month”. As the volume of AIDS related deaths slowed down with the new medication, the hyper media attention seems to die with it. However, HIV is still very much alive and the number of people being diagnosed yearly is rising dramatically. The issues facing newly diagnosed people today are very different to the issues which faced gay men in the 1980s. In the 1980s, gay men newly diagnosed were advised to medically retire and prepare for death. Today anyone being diagnosed is offered different advice. People are encouraged to remain in the workplace and to live as normal a life as possible. A new range of issues now present. Career development is not something to be pushed aside and people will still want to have lasting relationships with positive or negative partners and to have HIV negative children. All of this is possible.
Thank you, my name is GRAEME
Father, son, brother, uncle, nephew, neighbour, friend, colleague, partner, employee and living with HIV.
Graeme is a 53 year old HIV positive gay man, in a serodiscordant partnership, in full time employment, and with three adult children. In his spare time he is a volunteer peer mentor at Positively UK and a keen participant in amateur dramatics.