Achieving Physical and Emotional Resilience While Living with Hemophilia
Marc Pangilinan, Guest Speaker/Lifestyle Mentor for the New York City Hemophilia Chapter
I’m a bit of a latecomer to the hemophilia community, as I didn’t know another person with hemophilia or anyone related to hemophilia (outside of a treatment center) until I joined the community five years ago at age 26. Growing up with hemophilia, I yearned for physical activity but wasn’t allowed to participate in gym class. As a high school sophomore I had to prove to not just my parents, but to doctors, my health insurance company, school administrators, and coaches that I should be allowed on the track team.
That experience taught me I should never let hemophilia get in the way of living an active and adventurous life. I’ve never been content to hold back or stay on the periphery. At age 24 I decided to become an adventure traveler, a decision that’s led to numerous solo backpacking trips to Central America and Southeast Asia. Whether it’s hiking on active volcanoes or riding motorbikes, I like the idea of constantly pushing my body to the edge of its abilities not only in my travels, but also closer to home.
Granted, I haven’t always been able to do these things. At nearly every step of the way I’ve had to fight against pushback. But maintaining my prophylactic infusion schedule – and most importantly not viewing it as a burden – has allowed me to stay active and adventurous.
My active lifestyle has not been worry-free, however. For many years I’ve had to cope with anxiety and depression, an aspect of living with hemophilia that’s not much talked about. Research suggests depression affects as many as two-thirds of people with hemophilia. There is a popular infographic in our community that depicts hemophilia as an iceberg. Most people only see a small portion of what’s really there. Depression is part of the “bottom half of the iceberg” along with other “unseen” symptoms, such as pain and walking/mobility issues, that affect more than half of patients with hemophilia. Even in the absence of full-blown depression, living with a chronic, incurable disease can generate constant anxiety; nearly everyone with hemophilia experiences feelings of being overwhelmed by financial and emotional issues.
One effective coping mechanism is developing an internal language for my hemophilia. I tell myself, “I have hemophilia,” not “I am a hemophiliac.” To keep myself grounded, I spell out “hemophilia treatment center,” “prophylaxis,” and “infusion,” instead of using abbreviations and buzzwords like “HTC,” “prophy,” or “factoring up.” That reminds me to always tend to what actually needs to be taken care of. Working with my local NHF chapter as an active mentor to children and teens, I see a lot of anxiety over maintaining one’s infusion schedule, infusing in front of one’s friends, and not being able to participate in physical activities. Even among people my age, there’s considerable anxiety over mobility issues, reliance on a wheelchair, or an inability to do normal things. As if they weren’t bad enough on their own, anxiety and depression can trigger psychosomatic joint issues, as I learned first-hand before my first solo backpacking trip to Thailand in 2013. But it was those joint symptoms, and a fear of losing my physical capabilities, that motivated me to take that trip while I had the chance. That trip changed everything in terms of how I saw myself physically and emotionally.
For a person with hemophilia, the key to coping with anxiety and depression is having a pragmatic mental approach. It helps to remember that compared to a “death sentence” disease like cancer, hemophilia is a “life sentence.” I need to be able to account for my hemophilia, to manage it long-term. In other words, I’m constantly aware that the choices I make today will impact my life as far as 40 years from now. I accept that my daily life will continue to become harder than for someone without hemophilia; not just from a physical and psychological perspective, but also financially, socially, and professionally.
I’ve never made hemophilia the focal point of my life; I define myself as a world explorer. While I’ve always had to account for having hemophilia, that doesn’t mean I can’t be anything else. Coping with anxiety allows me to achieve high levels of physical activity, which itself mitigates much of the anxiety. That’s given me greater self-confidence, and I no longer expect unpleasant events to be soul-crushing; they’re just a small blip in my life.
In short, don’t be held back by what you’ve been told about hemophilia. For myself, being able to participate in adventure travel, to be able to say, “I did that” despite the supposed physical and psychological barriers of having hemophilia, is a huge driver and motivating force in living an active life while managing this chronic, incurable disease.