I get asked this question a lot. As a hemophiliac, what activities and sports can I pursue that can allow me to be active, yet keep me safe from the possibility of internal bleeding? It’s a sensitive subject for many hemophiliacs, especially in the third world. We don’t have access to medication, so it’s difficult—actually, near impossible— for hemophiliacs to simply go to a treatment center and get a prophylactic, or preventive, shot of their clotting factor. Which makes fitness of paramount importance to hemophiliacs
Sadly, the reality we face strikes fear in the minds of parents of children with hemophilia. And it’s easy to understand why. The lack of treatment makes us more prone to long-term internal bleeding. Often, therapy for internal bleeding is on-demand. Treatment is given only after the fact. And oftentimes, it’s too late to prevent it. So their kids are left suffering from painful bleeds for extended periods of time. Access to medication is scarce, so parents encourage their children to adopt a sedentary lifestyle to keep them safe. And many believe that promoting fitness for hemophiliacs is dangerous. In my observation, however, this precaution often crumbles in the long run.
Fitness has more benefits than drawbacks for hemophiliacs
Personally, I swim, play badminton, and practice Tai Chi. I also do some weight and resistance training on the side—but I approach this with caution. Much of the strength I’ve gained is a result of resistance training and I often pursue my other activities for recreation and fun—pools aren’t alwaya accessible. I can’t say, however, that weight training hasn’t left me unscathed. When I overwork my body, I also become susceptible to bleeds. So I really have to be mindful when I go through my regular training program.
Though risky, doctors urge hemophiliacs and their parents to participate in physical activities and recognize the importance of fitness for hemophiliacs. Many are hesitant, espeically parents. But the pros outweigh the cons easily.
It’s a risk worth taking, and here’s exactly why—
You will bleed less over time. Engaging in exercise strenghtens your body, making you more resistant to physical trauma. Having well-developed muscles protects your joints and prevent more bleeds from occuring.
It’s a healthy form of stress management. Exercise helps release happy hormones that help our mental state. Exercising helps raises endorphin levels that help boost pain tolereance and leave you feeling more relaxed. The brain releases dopamine, allowing us to feel more motivated and hopeful. All-in-all, it boosts your overall well-being—allowing you to feel better about yourself.
Challenging limitations is very empowering. PWDs can easily relate to the notion of overcoming adversity. In fact, it’s a lifestyle that many aspire to have and practice. Doing something you initially thought impossible well gives us a strong feeling of empowerment. It leaves us to become more well-rounded and confident as individuals. It takes us a step closer to transcending our disability truly learn to live with it.
You are able to set an example. Fitness plays an important role in the life of the average Joe. For hemophiliacs, however, it’s absolutely crucial in order to have a positive quality of life. Being able to push that limitation signals others suffering from the same affliction that they can do it too. Which is relevant in a group who has been discouraged from engaging in physical activity for so long.
It improves long-term quality of life. One of the silent foes a hemophiliac can face is a sedentary lifestyle. It leaves our muscles to weaken and atrophy making us susceptible to bleeds. Inactivity is a short-term solution to a lifelong problem. Focusing on your fitness goals and engaging in physical activities allow you to have a better quality of life, long-term. It’s a more solid answer to the problem of recurring internal bleeding and the deeper problem of chronic shame and insecurity.
Worry will always be there, and it’s okay
It’s completely understandble to be hesistant to try sports out. We’re deliberately shifting our mindset from what we were taught or influenced to think growing up. Although, I believe that it’s a necessary risk for us to be able to co-exist with our disabilities. It’s a rational fear to be afraid of physical activities—especially for parents. They never want to see their children suffer. But I believe being active and allowing them to live an active life—though within their limitation—is absolutely important to have a better quality of life.
Engaging in these activities makes us more familiar with our bodies, allowing for us to listen to it more carefully. It trains us to know our limitations and work around them—training us to work with, instead of against our disability. And it is through this cooperation that we can achieve things that are beyond what we believe we could do, as well as inspire others to do the same. And if you’re ready to pursue this path, I’ve prepared a quick primer you can follow.