Throughout the month of March, HF Healthcare will share inspirational stories from people in the bleeding disorder community. You can view previous inspirational stories from people in the bleeding disorder community here. Whether you are a parent, sibling, friend, or loved one, we would love to hear your story! If you would like to participate, Please click here or email us.
1. Tell us about yourself.
I’m a 21-year-old person who likes to write and do comedy. In my spare time I manage my own, non-blood related disease and hangout with the two cutest cats in the entire universe.
2. When Did Your (or your loved ones) Bleeding Disorder Effect You The Most?
Honestly, Michael’s hemophilia has been really good to our relationship, I guess, in that I haven’t found anything too “hard to handle” or anything like that. It’s just another part of him that I get to love. However, there was a time maybe a year ago when the relationship was still relatively new, and I was getting really good at knowing what to do for him during bleeds and learning a lot about hemophilia, when Michael got sick. Like, with the actual flu. And Michael is one of those people that, if it weren’t for the hemophilia, he’d be obscenely healthy, he never gets a cold or anything. So when he got this terrible, terrible flu, it completely blindsided both of us and it was weird realizing that, on top of bleeds, we’d have to get through normal-people illnesses too.
3. What aspects of your (or your loved ones) bleeding disorder inspires and/or motivates you?
I think what inspires me the most about Michael’s hemophilia is how much of a good companion it has made him. I’ve recently been going through a rocky time with my Crohn’s Disease and have spent a significant of time in the hospital, and then had to get surgery. Michael completely understood and anticipated everything I would need. He was used to and unafraid of talking to doctors and nurses, and he knew the right questions to ask. Even though it was kind of under bad circumstances, he got the opportunity to become an expert in being sick, and he took it, and now he’s one of the biggest resources that I have, and I think that the whole community of chronically-ill people has.
4. How do you give back to the community?
How do I give back to the community? Well, I guess the short answer is that I don’t, not yet anyway. I’m still really new. A year and a half ago, my point of reference for hemophilia was that is was what 8th grade science teachers used to teach genetics. But I think maybe, in a small way, that’s been helpful for Michael? His life has been so entrenched in this illness, and by choosing to work in a field dealing with it, he’s going to come across people like me. I’ve asked him a million questions, some that probably seem kind of silly and basic. But, he’s had to come up with answers that helped me understand without, you know, insulting me. So, how do I give back to the community? By asking a lot of dumb questions.
5. What advice do you have for someone who’s looking to get connected in their local community/chapter?
So, I just returned from the annual symposium for the Coalition for Hemophilia B. I spent a lot of time by myself because Michael was busy doing important things, but I had a great time. So I feel like my advice would only really apply to significant others who might be feeling shy alongside their partner who is super experienced in the community, but it is: just go. Get involved. Do a little research and then be a good partner. Even if you, like me, have a little bit of social anxiety and are afraid that you’re not qualified to be there, you will be welcomed with open arms.
Get Connected in YOUR Community
- Find your local chapter here.
- Get Connected with The Coalition for Hemophilia B.
- Participate in the Red Tie Challenge for Bleeding Disorders Awareness month.