How I fight against hemophilia and depression.
By Michael Bishop, staff writer and content design specialist for HFA’s Learning Central.
I’ve been wanting to write this article for a few months now. It seems like the conversation surrounding mental health is one constantly being had in the hemophilia community, and even so, is the one we don’t have enough. I’ve written different versions of this article. Stepped away from it. Come back to it. Deleted it. Missed my deadline. Given up on it. Rewritten it. Missed my deadline again. Deleted it again. But I do want to write it, because I think it needs written.Â
I have severe hemophilia B with an inhibitor and an anaphylactic allergy to factor IX products. I’ve struggled a lot with my hemophilia throughout my life. I’ve had more surgeries than I can recall, more bleeds than I think anyone would be able to recall, accumulated a lot of joint damage, developed chronic pain, missed important events, lost friends and relationships, become reclusive. Some years have been better than others of course. Some days are better than others. I’ve had a lot of happy times, too. And I’d credit my hemophilia for a good chunk of those times.Â
It is a struggle, though, and it took me a long time to realize what a struggle it is. I think like most people with bleeding disorders, I often feel like I have a handle on my hemophilia. Why wouldn’t we? It’s something we’ve had our entire lives, whether we knew it or not, so obviously we’ve learned to deal with it. Yes, we have bleeds, and it hurts, and it takes us away from normal life, but that’s always been the case, right? Surely things can’t get harder as we get older. But sometimes they do. While hemophilia is a constant presence in our lives, I think its most devastating characteristic is its inconsistency and unpredictability. It’s incredibly difficult, if not impossible, to completely cope with something so dynamically ever-changing.
Some years have been better than others of course. Some days are better than others. I’ve had a lot of happy times, too. And I’d credit my hemophilia for a good chunk of those times.
I’ve struggled with depression for most of my life. I think the first time it really appeared was when I was 15. I had just had my fourth or fifth surgery. Surgeries were nothing new. Pain was nothing new. But, it was the first time I could consciously feel my life drifting away from what I thought it was becoming. I had a cute girlfriend I’d met at a punk show, and I was excited to spend the summer going to punk shows with her. But suddenly I couldn’t.
Obviously, my plans had been altered by hemophilia before. People with hemophilia have to miss out on tons of things because of bleeds. This was the first time, however, that I can remember actually planning my life, months in advance, and having to deviate from that plan. When we’re kids, we’re not thinking months ahead. We’re hardly thinking hours ahead. So canceled plans, while devastating, were plans that only existed for, at most, a few days. As we grow up, that changes.Â
Hemophilia changing the direction of my life would become the impetus for a lifelong battle with anxiety, depression and suicidal ideation.Â
As I got older, I stopped planning summers of punks shows and started thinking about my career, getting married, becoming a father. Like everyone, I had a vision in my head of how all of those things would someday look. Then, as my chronic pain got worse, and my body stopped bouncing back as well from bleeds, and my physical limitations not only became more apparent, but more significant, that vision had to change. Then change again. And again. And it’s been hard to keep up with those changes.Â
I struggled with suicidal ideations when I was 25. I was dating someone who, throughout our relationship, had made me feel better about how uncertain my future had begun to seem. My plans for my future continued to change, but suddenly I had someone in my life who made that OK. Instead of going to therapy, or addressing my depression head-on, I thought, “As long as I have her, it doesn’t matter how bad things get.”
My hemophilia and depression are a challenge every day. They sometimes make me feel like a bad boyfriend, a bad friend, a bad son, a bad employee. But the important word in that last sentence is ‘sometimes.
Then she left. And with her, the mental safety net I had been building. This threw me into an overwhelming depression. All the mental health issues that had come as a result of my hemophilia, which I had been repressing, came flooding back all at once. I had to call a crisis line, get my friends to come over, change my surroundings and really start taking care of myself and addressing these issues. Thankfully, I was able to do all of those things, and I’m in a much better place now.
The depression is still there, though. My plans are still changing all the time, and I’m still struggling with that. My hemophilia and depression are a challenge every day. They sometimes make me feel like a bad boyfriend, a bad friend, a bad son, a bad employee. But the important word in that last sentence is “sometimes.” I’m still fighting. We talk a lot about how strong this community is, not only how strong we are as a whole, but also how strong we all are individually. But being strong doesn’t mean being strong all the time. It’s OK to be sad. It’s OK if you’re depressed and if you think hemophilia is hard and overwhelming sometimes. It is hard, and it is overwhelming sometimes.Â Â
Truthfully, the reason it took me so long to write this article is because I didn’t know how to end it. As a writer, it’s frustrating not knowing how to end something. I don’t have a perfect resolution to give you, one that would solve all these issues, one that led me to a place where I could say, “This is how I learned to completely cope with my hemophilia!” or “This is why our futures are going to be perfect!”
Having that would let me wrap up this piece of writing with a nice little bow. But I don’t have that. I wanted to write this anyway, though. Because the point is you just need to keep writing. It’s OK to not have a satisfying answer right now. That’s why you keep looking for it. Don’t ever stop looking. Â