Over the past few weeks, I’ve written about all the experiences I’ve had with my health and hemophilia over the past year. What I haven’t really talked about is the effect hemophilia has had on my relationships over the years—family, work and romantic. It’s tough for people with hemophilia, in that they experience pain from bleeds and have to endure endure infusions, hospitalizations, etc. These things affect their loved ones, too—spouses, partners, parents, siblings and friends.
Hemophilia has had a large impact on my relationships. I’m the youngest of four children. I was a surprise baby, meaning my parents thought they were done having children, and along I came. Surprise! My siblings were 16, 12 and 6 when I was born. By the time I turned 4, my oldest brother had moved out to live on his own, and my other brother was heading off to college. That left my sister and me at home with our parents.
Back then, to treat my hemophilia, I had to go to the hospital each time I had a bleeding episode to receive transfusions of cryoprecipitate. My mom always took me to the hospital, which was about a two-hour drive each way. We’d get up early, Mom would get my sister off to school, and we’d head to Washington, D.C., to the hospital. We’d often not get home until after dinner time.
I remember lots and lots of trips to the hospital. There were trips for every baby tooth lost, trips for nearly every fall I had, trips for obscure bleeds for which there was no known cause. My parents didn’t intentionally focus more attention on me, but I was naturally put in the spotlight because of it. Hemophilia was always lurking in the background at family gatherings, meaning my extended family was sometimes overly cautious when my cousins and I were playing, for fear I’d get hurt. My parents were pretty much of the philosophy, “Let him do what he wants.” I didn’t wear a helmet to protect my head, nor did I wear pads or any other protective equipment or gear.
I think it must have been hard for my sister to see all of the attention focused on me because of hemophilia. Sadly, she and I were never really close with one another and still aren’t to this day. She never vocalized that she felt left out or was jealous of the attention placed on me, although I would imagine it was difficult for her. Even though my older brother was also born with hemophilia and experienced the same things I did, for whatever reason, it was different between her and me.
As for other relationships in my life, hemophilia has also played a role. If I’m having a bleed or don’t feel well, I’ve had to cancel plans. Also, I’ve gotten the statement, “But you don’t look sick or like anything is wrong.” All my close friends are pretty familiar with hemophilia and what it means, so it isn’t really an issue. Romantic relationships have been tough at times, as many people have a hard time committing to a relationship once they find out someone has hemophilia. It’s hard to understand what living with a chronic illness like hemophilia is like. I think it can scare people away.
My partner Jarrod and I were very close friends for more than 12 years before we realized we were more than friends. We came to that realization a year ago and are now in a committed relationship with one another. Given our long history together, Jarrod was pretty familiar with hemophilia and what it meant for me, but he wasn’t directly involved. He’s been a daily source of comfort and support to me over this past year in helping me deal with all that’s happened. I’ve often felt like it was hemophilia and all the issues I’ve been facing over the past year that gave us the awakening to realize we were soulmates and needed to be together as a couple.
After we moved in together, Jarrod took an active role in my day-to-day life with hemophilia. If I get a bleed, he gets out the Cryo-Cuff® or ice pack, parks me on the couch and monitors me to make sure I’m following orders. Also, he knows the days I’m supposed to infuse prophylactically and will ask, “Have you done your factor yet?” He has learned a lot about my factor medicine, gone to doctor appointments with me and has pretty much learned how to access my port. I haven’t gotten him to do an actual infusion yet, but I know he will at some point. He understands there are days where I don’t feel like doing anything. I’m so lucky to have him!
While hemophilia is a big part of life and relationships, it doesn’t have to be the center of them. I’ve learned that education is key. Most people are uneasy or afraid because they don’t know. When you explain things and educate people about hemophilia, they tend to be more at ease. Hemophiliacs aren’t china dolls that will shatter if dropped. We might bruise, but we don’t break.
[Steps for Living: Relationships Beyond the Casual Date]