An Open Letter to My Husband’s Hemophilia

An Open Letter to My Husband’s Hemophilia

Dear hemophilia,

Truth be told, I hate you sometimes.

I especially hate you when you suddenly pop out of nowhere and find ways to ruin my husband’s life.

I hate you when you encroach on plans made weeks in advance; long-standing plans that were carefully and painstakingly thought out.

As a soon-to-be mom, I fear that you might stand in the way of the plans we have for our new family. One of my greatest fears is that you will enter our lives again when my labor draws near. As a person with anxiety, I can picture the scenario in my head clearly.

It’s never easy for me to deal with these fears. In the past, I have written about how carers inadvertently may be glorified as people with a seemingly “unlimited” stream of patience — individuals with “superhuman” strength. But the truth is far from that. We’re only human, too.

Likewise, hatred is a human emotion. In a somewhat paradoxical way, its nature is psychologically similar to love.

I might occasionally say that I hate you, hemophilia, because I can’t stand seeing my loved one in pain because of you.

I might say I’m sick of you because I want to set my husband free from a 25-year (and counting) cycle of suffering.

Much of the time, it feels like he’s in a wrestling match against you, and he’s the struggling underdog. I root for him endlessly and erupt into cheers at each and every one of his tiny victories — knowing what a strong contender you are, having beat so many other people like him to the ground. But somehow, you manage to sneak in a treacherous, destructive move, and suddenly, it feels like the match is ruined.

As much as I want to keep our team morale high (yes, my husband and I are a team), you, hemophilia, make it so difficult sometimes.

I’ve witnessed my husband struggle to live a normal life in spite of you, and every setback he encounters shatters my heart into smithereens.

It’s natural for a young bride to yearn for a rosy future with a happy family at the center, living in a happy home, with a more or less stress-free environment. And yet here you come, stubborn as you are, threatening to place a dark stain on that beautiful picture.

But you know what? That’s where I draw the line. That’s the moment I step up and declare out loud that I’m not going to let you.

You’re going to ruin plans sometimes. I just need to remind myself that one ruined plan does not equate to a ruined future, let alone a ruined life. And so I pray that better plans may come our way.

Realistically, it may be hard to accept that you’re never going away. But for now, or at least until the advent of a working and attainable cure, the best thing we can do is recognize that for the time being, you’re here to stay.

You’re a welcome guest, hemophilia. Stay in your corner and do what you need to do, even if it means making my husband bleed sometimes. That’s just your nature, and we accept you.

We may not be able to control you, but we can control the way we react to you.

Right now, my husband is exercising. He is building up his body so he won’t suffer the brunt of the next attack from you.

Meanwhile, I am trying to breathe and live in the now. I am exhausted and anxious from the prospect of birth, but the fact that my husband is beside me, giving me kisses and massages to soothe my aching pregnant body, gives me more than enough to be grateful for.

I’m sorry, hemophilia, you don’t define the life I live with my husband.

I’m not your biggest fan, but I think I can live with you.

Sincerely,

An anxious A strong wife

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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 Services, and are intended to spark discussion about issues pertaining to hemophilia.

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Alliah Czarielle, or Cza for short, is a life partner to a person with hemophilia and epilepsy. Her life's dream is to enjoy a happy and contented life with her family, while pursuing her own passion for arts, crafts, entrepreneurship, and fine jewelry. She is a strong advocate for equal rights and support for people with disability, as well as people with mental illnesses, being a struggler herself.

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