Dealing with loneliness during my husband’s bleeding episodes

These times are challenging, but there's a silver lining

Alliah Czarielle avatar

by Alliah Czarielle |

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Loneliness in marriage is a controversial subject, and one often discussed in a negative light. But in my marriage to my husband, Jared, who has severe hemophilia B and a seizure disorder, it’s a feeling that often creeps in whenever he’s stuck in bed due to a severe bleeding episode. Whenever this happens, we must put our usual routines and activities on hold. Yet life goes on, forcing me to do most things by myself.

This can be challenging for a number of reasons:

1. It’s hard to find the motivation to stay active. I have attention-deficit/hyperactivity disorder. Whenever I get antsy, it’s a sign that I need to move my body. Yet, finding the motivation to exercise without my default “body double” is tough. I admit, this is something I’m actively working on. After all, I must learn to be internally motivated to do things without needing another person with me.

2. Intimacy can be problematic. During these episodes, Jared’s focus on pain management or maintaining specific positions for recovery hinders the ease of intimacy and connection. Recently, he humorously remarked that only his pillows were “getting action,” as he had to keep his leg elevated during the healing process.

3. Oh, the guilt! There’s also guilt in enjoying activities alone while my husband is in pain due to a severe bleed. In my mind, it doesn’t feel right that he’s seemingly suffering while I’m going about life as usual — let alone having fun!

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The silver lining

Thankfully, it isn’t all bad. Amid these challenges, there’s a silver lining: an opportunity to be selfish, albeit in a positive way.

Every marriage, after all, has its ups and downs. And being married to someone with a chronic illness like hemophilia can get tiring at times. People in similar situations have reported feeling exhausted, worn out. It’s so common that there’s even a term for it: compassion fatigue.

One particular Quora response to someone seeking help for compassion fatigue struck me hard:

“You need friends. You need nights out with drinks and laughter and entertainment. You need evenings curled up in a hot bath with a good book and relaxing music. You need time sitting out in the sun where you can just doze and forget everything for a while. You need hobbies or career goals or things you do for *you* because you deserve to have things that you enjoy and love and just because.”

I could allow the feeling of loneliness to knock me down whenever Jared has a bleed. Or I could see it as a chance to focus on my own emotional and social needs.

A time for self-care

A woman shared on X (formerly Twitter) that one reason her 15-year marriage is successful is because she and her husband have hobbies they enjoy separately. While she loves walking, her husband does Brazilian jiu-jitsu.

Jared’s bleeding episodes grant me time to do things I love and to take care of myself. I might paint alone, go for a short outdoor walk, or visit a salon for a facial or massage. I could even focus on my work or on achieving my personal goals!

It’s still not ideal because I’d rather do most of these things with him by my side. Thankfully, Jared very much understands that I need these self-care moments for my sanity. He’s also a huge advocate of independence, often assuring me that he wants me to be my own person.

The guilt of “abandoning” him lessens when I remind myself that he’ll be OK. As long as he has what he needs — food, water, his laptop, and a TV — he can manage on his own.

He’s an independent adult, after all. And I look forward to him getting better each time so we can enjoy things together again.

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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