Why my husband would miss living with hemophilia

In a recent conversation with my husband, Jared, he dropped a bombshell. If he were given the chance to be rid of hemophilia entirely for the rest of his life, he said he’d hesitate to take it. He’d actually miss his current life with severe hemophilia B.

My initial reaction was utter disbelief. How could he possibly miss something that has caused him so much pain and inconvenience over the years?

At the time, I was grappling with acute body pain and two months of anxiety, both of which annoyed and inconvenienced me to no end; I just wanted them to go away. So why would Jared say he’d miss hemophilia?

More than a medical condition

As we delved deeper into our conversation, Jared revealed that hemophilia is more than just a medical condition for him; it’s a defining aspect of his life. From childhood to adulthood, hemophilia has shaped his experiences and molded his character.

Jared liked being “that kid with hemophilia.” It set him apart from others. Despite the occasional feeling of alienation he experienced, he was more often celebrated for living with a bleeding disorder. He took pride in having this one-of-a-kind experience that none of the other kids had. He enjoyed demonstrating intravenous infusions in science class, because he was the only kid who knew how they worked.

Jared attributes much of his strength, both physical and mental, to living with hemophilia. Knowing that he needed strong muscles to protect his joints and prevent bleeds, Jared took up sports, including swimming, yoga, tai chi, and badminton, from a young age. Because of the constant threat of limited mobility during bleeding episodes, Jared made the most of the times when he was bleed-free.

Moreover, the patience he learned from waiting to heal has served him well in adulthood. Through his struggles with hemophilia, Jared matured far beyond his years.

Grief and acceptance

But why would Jared grieve if hemophilia were to suddenly disappear? He explained it using a lesson he learned from one of his college professors: Sometimes we believe we want something so badly, but once we have it, it loses its significance.

I paralleled this tendency to a recent experience with my child’s kindergarten exam. For years, we’d pinned our hopes on her going to a particular school, which we felt would be perfect for her. I was so nervous leading up to exam day! But once the test was over, I wondered what I’d been so anxious about. It made me realize that we sometimes make a bigger deal of the anticipation than the event itself.

When the results revealed that my daughter didn’t get into that particular school, I wasn’t affected as much as I thought I’d be. In fact, I felt a sense of relief. With that knowledge, I now felt free to move on to the next step of our lives. Now that the weight of anticipation was gone, we could find a school that would suit her and figure out a way to afford it.

Similarly, if Jared were to have a shot at a more permanent treatment, like gene therapy, he might make a big deal of the anticipation, making a list of everything he’d do post-treatment and trying to accomplish all of it. But as soon as he’d established a routine without hemophilia and realized he’d lost an integral part of himself with the disease, he might end up feeling empty. Besides, he’d really miss certain aspects of his bleeding disorder, such as his routine of regular infusions and the sense of accomplishment that’s come with mastering his treatment regimen.

A core part of his identity

Ultimately, hemophilia is an important part of Jared’s identity. Despite its challenges, it’s shaped him into the resilient and determined person he is today. While the idea of living without hemophilia may seem appealing on the surface, Jared knows that he’d miss the unique experiences and lessons the condition has brought into his life.

Sometimes our greatest struggles are also our greatest teachers, shaping us in ways we never imagined possible. And for Jared, that’s a part of himself he wouldn’t want to lose.

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.