As a lifelong condition, managing a bleeding disorder is about more than just medical treatment—it’s also about providing patients with emotional support. The World Federation of Hemophilia (WFH) understands this reality, and that’s why the WFH 2020 World Congress is the only major event in the community that is truly multidisciplinary and patient-centric. The WFH understands that support is important to help people with a bleeding disorder manage the various aspects of their condition—including pain.
Pain is a fact of life for many people with a bleeding disorder, and every person manages pain in a different way. Clive Smith is a qualified barrister in the U.K. who has practiced criminal law for 11 years. Despite the fact that he has hemophilia and arthritis in his ankle, Smith has run the Brighton Marathon, competed in triathlons, and completed four Ironman competitions in the last five years. Today, he talks to Hemophilia World about the role of pain in his life.
How would you characterize the pain you regularly experience?
I feel that I have a relatively high pain threshold. I’ve had kidney stones, so I have experienced a high degree of pain during my life, along with my bleeds! Pain is something I have learnt to embrace and live with. I think it’s part of being someone with hemophilia.
What role does pain play in your life as someone with a bleeding disorder?
Mostly, pain is something I experience in my joints: my left ankle and elbow in particular. That is because they were my target joints growing up and I had lots of bleeds into them. Rarely do I wake up in the morning and not have a sore left ankle. It takes 5 to 10 minutes to warm up each morning. I usually limp around my home for a few minutes when I first get up.
Also, my left elbow and arm are weaker than my right. I tend to favour my right arm for carrying things generally. My left elbow tends to ache or become sore when carrying or holding things for more than five minutes.
Aside from that, I experience pain as a result of bleeds. I also experience pain as a result of exercise and training. Despite having hundreds of bleeds over the years, I find that I’m still not always possible to distinguish between muscle fatigue or strain and a bleed. Around 90% of the time I can work out which one it is, but it’s not an exact science when self-diagnosing.
How do you feel pain defines you?
I try not to let pain define me. But when it does, it makes me feel frustrated. One day I can have a “normal” activity level, the next day I might be house-bound. As someone with hemophilia, it does define me to an extent, however. I live my daily life with a degree of background pain that I’ve become very good at ignoring or learning to deal with. I have to plan for pain as well, in the sense I will always try and treat myself on days I know I am going to be travelling, because I know that I will be doing a lot of lifting and carrying bags, queuing and spending extended periods of time on my feet.
Would there be any disadvantages to being completely pain free?
Potentially, yes. Pain is obviously a signal telling you something is wrong, so it’s not something you want to switch off completely. Pain isn’t always a bad sensation either. Sometimes it can indicate fatigue after strenuous exertion leading to the release of endorphins. When I have a bleed, I rarely if ever use painkillers. I always want to know how much the pain has eased as a result of treating myself. I then know whether I need to treat myself again. If I were to take medication and mask the pain, I could potentially carry on with whatever activity I’m doing despite my body having not recovered fully from the bleed.
The WFH 2020 World Congress takes place in in Kuala Lumpur from June 14 to 17, 2020. We hope to see you there!