My name is Bryan Thompson.
Towards the end of 1997 and the first 6 months of 98 I became seriously ill-I had 2 spontaneous pneumothoraces.a pleurectomy,and a bilectomy.I began to lose weight rapidly and I was extremely fatigued.I went for an HIV test at the Ian Charleston Centre-when I returned for my result later in the day not only was I diagnosed as positive but I was offered a bed in the HIV ward-concern was so high.I spent one month on the ward-I was diagnosed as having AIDS related malnutrition and oesophageal thrush.I was 46 kg in weight and I had to be in a wheel-chair.Within 5 days I was started on my first combination of ritonavir,3TC and 4dT.
When I began combination therapy I was at the lowest ebb of my life. I felt so ill and I thought I would never find my way back to feeling well and healthy again. I felt so hopeless about my situation. I felt in total despair, A doctor said to me ‘In 6 months you will be feeling so good’- I didn’t believe her but she was right. Over the next 18 months I was able to return to work and enjoy life to the full again. In many respects more than I did before because I appreciated it so much more and I was grateful for the medication that gave me back my life. I was a star pupil-not missing a single dose.
But then 18 months into my treatment everything seemed to change. My body started changing shape - but what was most distressing was the changes in my face. I first began to notice the changes when I shaved. I developed crevices in my face which I couldn’t get the razor to go into. My cheek-bones began to protrude and my eyes became sunken; I began to look like a skeleton. The onset of atrophy was very sudden - in my case-between hospital visits, which at the time were 3 monthly; My doctor asked me if I had noticed the changes in my face – and of course I had.
Just as the doctor had noticed, so too did others - particularly at work. It wasn’t just that I looked as if I had lost weight but people wanted to know why my face was changing shape. For me these were awkward questions. I felt that my confidentiality was under threat - my face was blowing my cover and I was becoming identifiable as someone who looked unwell. This was at odds to how I was feeling but strangely I discovered that if enough people tell you that you look unwell that you begin to feel it.
As my face deteriorated, I became more paranoid of people looking at me, wondering what was going wrong. I felt so self-conscious and identifiable. I am able to disguise my distorted body shape through clothing but I cannot cover my face up - it is always on show. People would begin to make comments that really hurt, although they just felt that they were being honest - like a staff member who said, when I was planning to go to America-‘they will never let you in, they will take one look at you and know you are an AIDS victim’.
Every time I looked in the mirror I saw reflected a constant reminder of my condition-my HIV was on my face. Whereas before I was able to incorporate HIV into my life-now it was taking over. I work full-time as a manager in social services. Everyday I have to take a lift up to my office; the lift has a mirror, what I see has a direct effect on the rest of my day.
My atrophy fluctuates - if I am tired, drawn or unwell it is accentuated and I become very aware of it through-out all the meetings that I have to attend. On a good day it is less noticeable and I can be more confident in my work situation.
My attitude towards my medication changed: I no longer saw it as life giving but felt that it had turned against me - it was beginning to cause me distress - I began to resent the pills.
As my unhappiness grew I desperately tried to find an answer-I changed my combination 4 times, stopped treatment for 6 months and joined a support group for people with lipodystrophy. Nothing worked. There was no improvement. At the support group someone said that they recognized me from my local pub and that when I walked in-he and his friends had remarked how they knew that I had lipodystrophy. I didn’t want to go back to the pub after that. I felt so unattractive and my sex life has deteriorated. My face is off-putting. I felt that I no longer could choose whom I disclosed my status to-people knew and it was out in the open.
Dealing with HIV is stressful at the best of times, and I have always tried to find ways of minimizing the stress but this felt so out of my control. I don’t have a long term view of life anymore. I live for the moment and anything that I can do to improve the quality of my life I will do. I remember seeing the before and after photographs of New-Fill for the first time - it gave me an option and hope that I could buy some extra quality time now.
I feel angry that this treatment is not available to me and that the effect that this has on my life is not taken seriously.
I want my treatment to be holistic - I want to blend into society - I don’t want to draw attention to the fact that I have AIDS.
I am concerned that any criteria that is produced regarding the availability of New-Fill will be too restrictive and that I will not qualify. Having to write to my parents requesting financial help, as an adult this is humiliating-it shouldn’t have to be like this. I shouldn’t have to stand before you today to try and get my treatment. Many don’t have these options-at my support group many people had not disclosed their status to their family or colleagues. One, a school teacher, felt very under threat.
l have not returned home to Ireland for 4 years - not because I don’t want to, but because my family are scared of what people will think. They feel a sense of shame about my HIV and do not want it revealed. I want their support and I don’t want to cause them unhappiness.
For me New-Fill is not about vanity or cosmetic surgery - it is about quality of life and I hope that in the discussions that take place at this forum highlight this.
Bryan Thompson, January 2001
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