My mom asked me last week if I ever curse my dad for giving me hemophilia. It was a fair question.
Recently, I had a bad joint bleed in my shoulder. And by that, I mean a really painful shoulder bleed. A wake-up-at-3-a.m.-in-excruciating-pain shoulder bleed. There were moments when I debated whether I needed to go to the emergency room. I just wanted the pain to stop. I cried.
Pain medication didn’t help. I slapped a lidocaine patch on the painful area (although the pain was really in the joint and not near the surface; it was 3 a.m., I wasn’t thinking). Finally, I grabbed an ice pack and tried to get back to sleep. I cried again. Stupid hemophilia!
Sleep was awful. I tossed and turned. The weight of my blanket hurt my shoulder. The angle of my pillow hurt my shoulder. The air hurt my shoulder.
Time for the emergency room?
After the sun came up, I continued to debate visiting the emergency room. The pressure in my shoulder joint was great. I fantasized about begging a doctor to put a needle in my shoulder joint to remove the blood and relieve the pain and pressure. (Note: There is considerable debate as to whether this helps or further damages a bleeding joint. You should always consult your hemophilia specialist.)
It was too early to infuse more clotting factor, and I would have to wait hours. Enduring the pain until my next infusion was the task at hand for the day. I decided that I would head to the emergency room if I didn’t experience substantial relief after my next infusion. While I used ice off and on all day, it had minimal impact. I was very weepy. Yes, I was hating hemophilia — a lot.
Thankfully, the factor infusion helped tremendously. While the pain was still there, it went from excruciating to bearable. I would make it through without heading to the hospital. It would take four days of factor infusions for the pain to subside enough that I could get a decent night of sleep.
‘Do you curse your dad?’
When I recounted the story of the shoulder bleed (it was actually my second shoulder bleed in three weeks), my mom asked the aforementioned question.
The answer is no. Actually, the answer is “NO!” I do not curse or blame my father for giving me hemophilia. First and foremost, he didn’t know he could pass hemophilia to his daughters. At that time, it was thought that women could not have hemophilia.
He knew his daughters would be obligate carriers of his hemophilia mutation. My dad expected we would have some tough decisions to make about having our own children. That said, he believed there would be a cure by the time my sister and I had kids. (If only he were right. But the treatment is better!)
He did not know he would have two girls who would one day have hemophilia diagnoses themselves. If he had known, maybe he might have paused, but then we wouldn’t be alive.
Sometimes I hate hemophilia
There are times when I really hate hemophilia. There are times when I am overwhelmed and cry, when I wrestle with the frustrations of the limits of this disorder. Never in those moments have I thought to blame my dad.
In contrast, those moments actually make me long for him. I hate that he is gone. It makes me angry that my diagnosis came after his death. I wish he were here to help me. I don’t hate my dad when times get rough and I am in pain and bleeding. No, in those times I miss him terribly.
Hemophilia is an experience my dad and I should have shared and did not. We were robbed of the opportunity to grumble about hemophilia together. He isn’t here to give me tips on how to self-infuse or identify a bleed. And in those moments when it gets really rough, he is not here to say, “Shellye, I understand. I lived it, too.”
I don’t hate my dad, I miss him
Whenever I speak at a conference, assist with advocacy, or write a column, I think of him. I carry him with me. I know how proud he would be that both of his daughters are active in the hemophilia community.
Hemophilia is something that connects me strongly to my dad, whom I love dearly. It is a bond we share, even in his absence. Sometimes struggling with hemophilia all but crushes me. Yet, it makes me who I am and it made my father the man he was. I will never blame or curse my dad for giving me hemophilia. I will always miss him.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.