Kind stranger, don’t worry about my husband’s hemophilia bleeding

First meetings are always awkward, aren’t they? Well, I have the perfect icebreaker: Did you know that my husband, Jared, has hemophilia?

Most people I meet are taken aback by this. Those with a thirst for knowledge are often intrigued. How often does one meet a person with hemophilia, anyway?

Just so you have an idea, according to the Cleveland Clinic, about 10 in 100,000 people have hemophilia type A in the U.S. Jared is even rarer, as he has hemophilia type B, which affects only 3 in 100,000 people in the U.S.

Don’t worry, he’s used to it

If you’re hearing about hemophilia for the first time, you might be concerned, given the lifelong nature of the condition. You might fear that this invisible illness could be terminal. But although hemophilia has no cure yet, it is quite manageable, if you know how to live with it.

Fortunately, Jared is quite well adjusted with his hemophilia. He’s lived with hemophilia since he was born, so he knows the ins and outs of his illness. Over time, he’s learned some hacks that help him stay healthy and thrive (more on that later).

He compares learning to live with hemophilia to learning to ride a bike. You might fall the first few times, but eventually, the bike will feel like an extension of your body. Similarly, a young child with hemophilia might struggle with learning skills like self-infusing clotting factor. But with enough time and practice, it will become second nature.

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A different standard of severity

When you were a young child just learning to walk, you probably fell down quite a bit. Your adult carers reassured you that your wounds would heal. How amazing!

With hemophilia, however, it’s different. A simple open wound might take over a week to close, as only an unstable, semi-liquid clot that’s easily removable might develop. On a much more serious note, internal bleeds can happen for no apparent reason. These can take weeks — or even months — to fully heal.

For someone who’s known all their life that most injuries should heal rather quickly, Jared’s injuries might seem alarming or even life-threatening.

But worry not, because over time, he has developed his own standard to gauge how severe an injury is. As long as it doesn’t affect his daily life too much, he’s fine with it.

And don’t be surprised if you see him up and about while nursing a bleed. Or using one hand to do household chores. Or scooting around on a computer chair. Trust me, he’s not having a hard time. These are just some of his life hacks for being productive during a flare-up.

After having had hundreds of internal bleeding episodes, Jared has learned to flex his creative muscles so he can live life as normally as possible, albeit in different ways.

Don’t feel sorry for us when pain pays a visit

Now and then, you might see Jared grimacing in pain, particularly from the much-dreaded iliopsoas bleed. In times like this, he may not even be able to stand up.

But please don’t pity him when this happens. I know it’s worrisome — I sometimes can’t help but feel anxious whenever he has a bad bleed. But in this case, I simply need to remember that my anxious thoughts do not match reality. Because in truth, with the right treatment (factor infusion and rest), most bleeds should go away.

If you worry about me as a carer

I know that what my husband and I go through sounds like a lot. It’s normal to want the best for one’s spouse, because we love them. Likewise, it can be difficult to see that person in pain.

But don’t worry about me, either. I’ve come to accept that physical pain is a part of our reality. After all, hemophilia comes with the person I chose to marry. Occasionally, it might feel like a third party in our marriage, but as long as we can stand united when it threatens to tear us apart, it’s no big deal.

If you’re really concerned about me, ask me about whether I’m keeping up a good self-care routine, or if I’m doing well at work. We need money for our daily needs, and to obtain mental health and medical support. So it’s of utmost importance that I’m thriving financially.

Kind stranger, if you want to be of help, know that what we want isn’t sympathy or for people to feel sorry for us. All we want is the chance to live our best lives in the way we want, without having to settle for less. Spread the word!

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.