Video Interviews: Discrimination & Stigma
About this clip: Genetic Disorders and being positive about life.
Five people talk about how they overcome the worries and problems that genetic conditions can bring and how they look towards their future and the future of other sufferers.
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Discrimination and Stigma
I have been discriminated against for my epilepsy, in fact I have been quote "fired" about three times for it and I actually did turn around and take somebody to court and we settled before we got to court. Again, epilepsy is something that thousands and thousands of people have, the fact that I have TS, I am still just one person with epilepsy.
That's one type of discrimination. I'd also say that discrimination can be in other areas. If you write that you have a genetic condition on any kind of form, everyone sort of tenses up and perhaps they don't really understand. No-one is going to sit and listen to you about TS because it takes too long to understand, or most people think it does anyway.
I'd say the other thing is that a lot of people don't expect much out of you. "Oh she's got tubular sclerosis so why should we expect anything from her". They immediately start to classify you as something that you're not. I'd also say that in dealing with doctors and nurses and certainly with the NHS, I've had to fight for what I've wanted. I've had to go in there and sort of prove that I've got a condition and ask for some sort of understanding about it.
Where I have actually qualified for help, because I have been on dialysis for example, trying to explain TS is difficult. Perhaps if there was more understanding about the fact that there are a lot of genetic conditions out there that people don't hear about, don't understand and need to understand and the fact that patients need a lot more respect these days too. Sitting there listening to Doctors mumbling about you, sometimes, in a hospital, and you think, "What do they think? I don't really understand what they are talking about". I think Doctors need to be able to turn around to you and talk to you not just amongst themselves like you are some sort of kid, we're not, we're adults and we want to know what is going on with our condition we need answers. Discrimination can be keeping you out of the picture. As a patient, I think you need to push in and make sure you are in the picture all the time and if you're not getting answers from your GP, then move on, get referred. Lots of GP's don't understand about TS, find a specialist, contact the TSA or Genetic Alliance UK and get professional advice from somebody else but don't just sit there and be put upon.
One of the other ways that haemophilia has affected my life was in that period when many haemophiliacs contracted HIV from the treatment. That is one of the main problems with blood treatments, the fact that you can pass on viruses very easily, and that is why so many haemophiliacs actually contracted HIV. It affected me in a lot of ways, although I wasn't affected by HIV, there was a stigma attached to all haemophiliacs and it got to the point where, if you were a haemophilic you didn't tell people you were a haemophiliac. You had to try and bring it in gently after you'd known them for a while. It could be a bit awkward if you had a haemorrhage at the time and you couldn't use your arm or were unable to walk. When I first met Cath it took me a little while to actually tell her I had haemophilia, because of that worry of meeting someone, and everything else, and it was awkward. I lost a lot of friends when people thought that all haemophiliacs were infected by HIV. I also lost employment and I found it increasingly hard to get a job because of that problem and it affected me quite a lot socially.
When the HIV virus was first around, I think a lot of people didn't realise how haemophilliacs had caught it. They lumped them together with drug addicts, homosexuals, the whole lot, there was a lot of stigma attached to being a haemophiliac. I think as time has gone on, people understand a lot more about the viruses and the way they are transmitted and although there is still stigma attached to them, I think the general public do have a lot more idea about how those viruses are passed and contracted.
They are thinking that they might catch something from you or just basically not understanding the condition. Cancer is more understood now than when we first started.
Growing up with Cystic Fibrosis was slightly difficult at times especially during primary school. Some of the other children didn't take to it very well and thought I was quite different and I used to get slightly bullied, but now that I'm older it's much easier to cope with. My friends are very understanding. The people around me look after me and keep an eye on me and make sure I'm taking my jabs. So now, it's much easier and you just get on as normal.