JASON - my story
Haemophilia is an invisible disability.
I usually wake at 8am to the strains of the news on my local BBC station and pain in my ankles. The closest analogy is having a wooden stake driven through your ankle joints.
Sometimes I wake up with a slightly different pain and I know it’s a bleed. This pain remains long after my morning regime. Thankfully they screen the blood products properly now. Pure Factor IX is instant. I inject myself and within a few hours I get my day back on track with a slow and cautious walk to my neighbourhood shops. I’m glad I’ve got this regime, it makes me grateful for every new day.
When I was two years old I fell out of a window and was taken to hospital because I was bruised all over. This is when my family first discovered I was haemophiliac. I was so small and didn’t have any proper veins that the doctors could use, so they had to perform what is called a ‘cut-down’ on me. My ankles still have the scarring.
During the summer of 1986 I was admitted to hospital because I had a stomach ulcer that wouldn’t stop bleeding. In the course of receiving my daily dose of Factor IX, I started shaking. The doctor told the nurse in attendance that he thought he’d injected me with Factor from a bad batch. I didn’t have a clue what he meant at that time.
It was six years later after several blood tests that my consultant confirmed that I had hepatitis C.
From the time I could crawl I would always read newspapers, or at least look at the pictures. There is something about the printed word that appeals to me. My dad fed my hunger with a daily bundle of newspapers whenever I was laid up in hospital. I would write letters and articles for newspapers and magazines.
For a few years I had a tutor at home and lessons on the ward whenever I was hospitalised. This one-to-one tutoring helped me to concentrate on my studies. In a big school I could have been easily overlooked and fallen behind. I would like everyone to be educated this way.
My parents and close family would happily wrap me in cotton wool. When it became time for me to go out into the world with my haemophilia, not wanting to be treated differently, I thought, ‘well I won’t tell anyone.’
My interest in music grew during my teenage years. I remember talking to a music rep and saying ‘if a job comes up in your company please let me know.’ So one evening I was out at a concert that he’d got me tickets for, and he said ‘oh we’ve got a job in the post room.’
I got that job and apart from the post room, I was put in charge of disco promotions. I used to go round to the clubs where the radio DJs were appearing. Usually by the time the promoter got to the radio station to give them the new releases they would say, ‘Oh Jason already gave me this.’ Within two months I got promoted to radio and disco promotions manager after the promoter left the company.
There’s times I’d be in work and I’d have a gum bleed and I’d be like, ‘oh I must have eaten a crisp and it cut my gum.’ If I’d said to colleagues straight away that I have Haemophilia they might have put up barriers. During the 80s and 90s with the link between Haemophilia and HIV, I feared being ostracized.
I’ve always had situations where, say, I’ve put together an itinerary for a marketing tour and it was always in the back of my mind, would I see it through or was I going to have a bleed? It might be psychological but once the adrenaline starts pumping, you think, ‘I’m doing this and I do want to see it through,’ and you do get through.
The last major job I had, doing sales at a record company resulted in me getting the sack. I can put it down to being told that I had Hep C, I couldn’t concentrate at work. I had a few issues and then they got rid of me. They said I wasn’t performing.
I took them to a tribunal. The tribunal ruled in their favour. I didn’t disclose any details of my medical history.
When I’ve told other Haemophiliacs what I’ve done with my career, they’ve said, ‘if I were you I don’t know if I would do anything like that.’ That’s not because of them, it could be because of the environment they grew up in where you do have people saying you’ll never achieve anything because you’d never be able to see a job through to the end.
As haemophiliacs we can be invisible, but I think we have built up a really good community because we’re all in the same boat. Sometimes I feel good talking to other people, and not necessarily about the disease or the virus, but just about their lives. The community spirit I enjoy, but if we had our wish, none of us would want to be in that group.
I have several hospital appointments every week now, so work is not an option.
I listen religiously to Pop Master on Radio 2. Having been in the music business it tests my memory. I also love going on visits to Bath and other towns and cites within the UK.
I’ve been infected with something I didn’t ask for. Other countries have compensated their ‘patients’, and I include the widows as well, because of the husbands they’ve lost. Haemophilia affects men only. That might be why I’m single, I could die and leave my widow or my whole family in dire straits. Life insurance isn’t an option when you have Hep C.
I was treated with Interferon for the Hep C, which is not very nice. It didn’t work for me. I do know of others who have cleared the virus after the treatment.
Every night I go to bed knowing that I will awake with the same painful joints. But I’m lucky because I’ve got my regime.
Jason Brown is a pseudonym, as the interviewee prefers to remain anonymous.
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