My Husband’s Hemophilia Helps Me Better Handle Disappointment

Unexpected crises have taught me to cope with plans that go awry

Alliah Czarielle avatar

by Alliah Czarielle |

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I’ve always had a hard time handling disappointment. I grew up labeled a high achiever and was accustomed to meeting high expectations. I feared disappointing other people, or feeling that my best efforts just weren’t enough. As a result, I became sensitive to disappointment, rejection, and failure — a fearsome triad that soon dominated my entire life.

Even well into my college days, I was rigid and easily frustrated. I’d lose interest in activities and quit the moment I felt I wasn’t doing well. Changes in long-standing plans didn’t sit well with me. To deal with this, I thrust myself into reckless spontaneity. I thought I’d never feel disappointed about botching something that wasn’t planned!

But when I met my husband, Jared, who has severe hemophilia B and a seizure disorder, my mindset toward the fearsome triad began to change.

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It wasn’t that I ran out of things to feel disappointed about. In fact, quite the opposite held true, given the nature of my husband’s chronic illnesses. Yet I found myself much less unsettled in the face of disappointing moments, and that was quite a development.

Accepting Jared’s chronic illnesses meant I also had to accept that disappointments were going to be a normal part of our lives. Plans could change at the snap of a finger, and I’d have to learn to be OK with that.

I can still recall instances when a sudden bleeding episode interrupted a fun trip, cut an errand short, turned a relaxing vacation into a hospital visit, or cost us a few precious hours of sleep. To say that I never felt at least a twinge of disappointment in the wake of such incidents would be a lie. But life must go on, and while waiting for Jared to recover, I can find other enjoyable activities to do.

As spouses and carers, we’re normally invested in our partner’s feelings, especially if they’re going through a rough time. But we must not forget that we’re still individuals. I remain responsible for managing my own feelings during this emotional storm. I must do what’s necessary to stay calm and centered while rough and stormy waters are rocking my lifeboat.

Thankfully, these bothersome incidents don’t happen often enough for me to feel anxious. In fact, such interruptions only happen once in a blue moon. In the four years my husband and I have been married, we’ve had far more successful (and unremarkable!) experiences than the days that fell flat because of a rogue bleed. (Yes, I mention the unremarkable experiences, too — because better an unremarkable experience than a disappointing one, right?)

Of course, I’m still a work in progress. After all, I’m human. And it’s a perfectly human tendency to feel disappointment when enjoyment is cut short, or if a comfortable routine is interrupted. What’s important is that we learn how to deal with these feelings and know what to do to keep ourselves preoccupied while waiting for the good days to come.

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.


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