We’re Fine Doing Things on Our Own Because We’re Well-adjusted to Chronic Illness

Humor, curiosity, and adaptability are the keys to parenting success for this couple

Alliah Czarielle avatar

by Alliah Czarielle |

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My husband, Jared, and I are just starting to figure out family life. As novices to the world of parenting and homemaking, we’re navigating our child’s formative years and learning to maintain a household through trial and error.

Living by ourselves has been an especially helpful experience. Choosing not to depend on anyone else meant that we had to become self-reliant. We learned to do so many things. We also discovered how to gauge when we really needed help, which humbled us whenever we had to ask for it.

Jared and I are parents with disabilities, so we’re not surprised if people assume we need a great deal of help. Jared has severe hemophilia B and a seizure disorder. Some bleeding episodes leave him bedridden, which interrupts his daily routine. Meanwhile, I have ADHD and bipolar II disorder. These psychological conditions require me to adjust my lifestyle and work environment so that I can function at an acceptable level.

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It’s true that we could use some assistance, but there’s a catch: It’s not always obvious what kind of assistance we need and when we truly need it.

We’ve had our fair share of well-meaning people offer to assist us in ways that turned out to be more harmful than helpful. And, truth be told, this is one of our pet peeves. Most of the time, we prefer to be left alone with our day-to-day responsibilities, such as household chores, parenting duties, work, and so on. We’re usually fine doing these things by ourselves, because Jared and I are rather well-adjusted to our unique situation.

Adjusting to chronic illness

Jared believes most people with disabilities are excellent at adapting to difficult situations. He has developed coping strategies to help him stay productive on a daily basis despite his occasional struggles with hemophilia. One of these strategies is humor.

Not long ago, Jared had a wound on his scalp that wouldn’t stop bleeding. Blood trickled down his face and covered his white shirt with bright red stains. At the time, we were doing chores with a hired helper. She was so alarmed by the sight of blood that for a moment, she could hardly focus on her tasks! Jared calmed her down and assured her it was “no big deal.” Then he grabbed a sanitary napkin, secured it onto his head with a funny-looking scarf, and carried on with his work as if nothing had happened!

It looked silly, but in reality, his willingness to poke fun at hemophilia transformed a stressful environment into a cheerful and productive one. Our house filled with laughter that day as we carried on with our chores feeling energetic and agile, as Jared provided the comic relief.

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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