Richard’s Story

Throughout his life, he has occasionally felt isolated due to his condition. “For me this has happened when I’ve suffered injuries or have faced challenges that have been the result of haemophilia. Those are the times when you have all the questions of ‘why me’, ‘nobody understands’, ‘it’s not fair. It used to get me down for two main reasons – firstly I’m a naturally very active and competitive person and if an injury related to haemophilia stopped me from training or competing, I found it very frustrating in terms of feeling that it was preventing me from reaching my sporting potential; and secondly the more basic feeling of worry that people would think that there is something wrong with me.”

When you are living with a rare condition, it’s sometimes hard to find people who understand and share your experience. For many people living with a bleeding disorder, a sense of isolation is something that they often feel. And not having those people with similar experiences to connect with can make this feeling worse.

“We can’t know the challenges that other people face, even potentially people that we know well.”

Thankfully, Richard has his twin brother, Nick, who also has a bleeding disorder. “We share similar interests and as a result we’ve faced similar challenges related to haemophilia. Having someone so close who you can have completely unfiltered conversations with about haemophilia is massively beneficial. I do think that it’s incredibly important that people within the bleeding disorders community have a network of people with shared experiences that they can rely on for friendship and support.”

Most of the people in the community that Richard has met have been at events hosted by the Haemophilia Society, and he’s found it enlightening to get an understanding of the experiences that different people have. “We can’t know the challenges that other people face, even potentially people that we know well. That’s helped me understand that haemophilia isn’t some dreadful malady to be frightened of or ashamed of. It’s just something that is part of me. Plenty of people face much larger challenges, some that I know about and some that I don’t. We’re all made differently and while I am a haemophiliac, I am many other things as well, a lot of which are far more significant than haemophilia.”

So, how can we beat the isolation that some people feel as a result of their condition? Richard concludes, “As a community, I think we should make the most of the opportunities to get together and to get to know and support one another – it’s not always easy with geographic and other limitations, but it’s definitely worth it for the feeling of togetherness and support that you can both contribute towards and benefit from.”