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How I fight against hemophilia and depression.

By Michael Bishop, staff writer and content design specialist for HFA鈥檚 Learning Central.

I鈥檝e 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鈥檛 have enough. I鈥檝e 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.

I have severe hemophilia B with an inhibitor and an anaphylactic allergy to factor IX products. I鈥檝e struggled a lot with my hemophilia throughout my life. I鈥檝e 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鈥檝e had a lot of happy times, too. And I鈥檇 credit my hemophilia for a good chunk of those times.

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鈥檛 we? It鈥檚 something we鈥檝e had our entire lives, whether we knew it or not, so obviously we鈥檝e learned to deal with it. Yes, we have bleeds, and it hurts, and it takes us away from normal life, but that鈥檚 always been the case, right? Surely things can鈥檛 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鈥檚 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鈥檝e had a lot of happy times, too. And I鈥檇 credit my hemophilia for a good chunk of those times.

I鈥檝e 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鈥檇 met at a punk show, and I was excited to spend the summer going to punk shows with her. But suddenly I couldn鈥檛.

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鈥檙e kids, we鈥檙e not thinking months ahead. We鈥檙e 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.

Hemophilia changing the direction of my life would become the impetus for a lifelong battle with anxiety, depression and suicidal ideation.

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鈥檚 been hard to keep up with those changes.

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, 鈥淎s long as I have her, it doesn鈥檛 matter how bad things get.鈥

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 鈥榮ometimes.

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鈥檓 in a much better place now.

The depression is still there, though. My plans are still changing all the time, and I鈥檓 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 鈥渟ometimes.鈥 I鈥檓 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鈥檛 mean being strong all the time. It鈥檚 OK to be sad. It鈥檚 OK if you鈥檙e depressed and if you think hemophilia is hard and overwhelming sometimes. It is hard, and it is overwhelming sometimes.

Truthfully, the reason it took me so long to write this article is because I didn鈥檛 know how to end it. As a writer, it鈥檚 frustrating not knowing how to end something. I don鈥檛 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, 鈥淭his is how I learned to completely cope with my hemophilia!鈥 or 鈥淭his is why our futures are going to be perfect!鈥

Having that would let me wrap up this piece of writing with a nice little bow. But I don鈥檛 have that. I wanted to write this anyway, though. Because the point is you just need to keep writing. It鈥檚 OK to not have a satisfying answer right now. That鈥檚 why you keep looking for it. Don鈥檛 ever stop looking.


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