My Evolving Relationship To Exercise As A Hemophiliac

Running, I felt the wind on my face. I felt free. Quite a cliche way to start recalling an old memory, isn’t it? It was some sunny afternoon in Brooklyn. I’m 25 now, I must have been around 15 at that time. I remember the feeling of my legs moving, and how I just wanted to keep going. The rush of adrenaline, the biologically produced feel-good chemicals that come from exercise…

I don’t remember when, but my right knee became swollen at some point in the next few days after that. The feeling of disappointment was prominent, the decision to put any hopes of becoming a sporty person, a dream deferred. Not that it was ever a huge dream of mine, but it became even less so at that time.

Fast forward 10 years. I have gone through many life experiences, growing physically, mentally, emotionally, professionally. Hemophilia medicine has gone through a growth of its own, advancing on levels of convenience, variety of medicines, etc. Last month, I switched from a standard half-life (SHL) product that I’d been on almost all of my life to an extended half-life (EHL) product. For the first time in my life, being covered to some extent for the whole week was realistic. In the past, the 3x weekly frequency of SHL prophy made it difficult for me to stay on schedule at times, so sometimes my levels would be at their baseline of below 0%.

I never became sporty within that time on my SHL. At times, I did go through feeling “I will exercise, make my muscles strong, do a regular strength training at-home routine”, however, multiple times I got a bleed after exercising. The uncertainty and discomfort of dealing with bleeds deterred me from exercising. I knew the importance of exercising to cushion my joints with strong muscles; I’d heard Physical Therapists and HTC professionals emphasize this, but there was a real barrier to achieving that.

In the past month, I have stayed on my 2x weekly prophy schedule, and my factor levels have stayed above 0%. Mentally, I still feel hesitance and fear toward physical activity. This month, I’ve seen my left arm slightly swollen and my finger bruised twice, from daily life activities, not even exercise. The fear of small injuries escalating into bigger issues and even impairment of function short or long-term, is still ingrained in my psyche, but this time the issues resolved within one day. It is such a strange feeling for me.

I want to exercise more. As I get older, gaining muscle strength will help protect my joints. Exercise can also contribute to my health and quality of life. However, that fear of injury is still there. There’s a stagnancy that I have developed over my life. I wonder how to move through this as a Hemophiliac. I wonder if other community members have faced some of these challenges as well?

I want to have a regular Tai Chi practice one day. I want my arm, back, and core muscles to be stronger. I live up five flights of stairs and walk a lot, so at least I know that, at least, once I gain the courage to exercise regularly, I won’t have to focus on leg day.