Why a holistic definition of health is more useful to our family

A columnist grapples with answering queries about how her husband is doing

Alliah Czarielle avatar

by Alliah Czarielle |

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It usually starts as an innocent question in an attempt to make friendly conversation with my husband, Jared, and me.

“So, how’s Jared? How’s his health?”

Those who ask this question are often aware that Jared has hemophilia B and a seizure disorder. But not everyone knows how these conditions affect him, much less how he manages them.

“Pretty stable,” I usually reply.

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Similar quality-of-life problems reported by hem A and B patients

What having stable health means

“Stable” means nothing has really changed regarding Jared’s conditions. He still has bleeding episodes every month or so. He occasionally has seizures, especially on heavy emotional days. Thankfully, his current meds are much better at keeping attacks in check than the previous ones were.

Hemophilia is unpredictable by nature, making it impossible for us to know which body part will bleed next. The best we can do is be prepared for any possibility and learn to manage everyday life with temporary hiccups. This involves adjusting expectations and goals depending on Jared’s capacity on a particular day.

Sometimes Jared can do a lot. On a good day, he can lift 100-pound weights, prepare a three-course meal for our family, and work more than eight hours. But on a bad day, he might be confined to his bed, immobile for three days to a week and unable to concentrate on work. On those days, he plays hand-held games to distract from the pain of a bleed.

Stable is the best it can get

I’d hate to let anyone down, but having stable health is the best we can ask for. Unless a new treatment comes along to help him stay bleed-free for longer periods of time, he’ll likely continue to have bleeds every month.

Should prophylactic doses of factor finally become available — and affordable — in the Philippines, where we live, Jared might have a shot at enjoying a bleed-free year. But for now, that remains a pipe dream.

Monthly bleeds are his normal. They’re the baseline from which we gauge the state of his health.

As long as the frequency of his bleeds stays roughly the same and he doesn’t have the “bad” kind of bleeds more often, we see no reason to worry.

What is a more holistic definition of health?

In the past, health was equated to the absence of infirmity or disease. It’s a definition I personally find limiting, as it dismisses the subjective experience of people with chronic illnesses who don’t fall within this category but can still live happy and fulfilling lives with the aid of modern medicine.

In 1948, the World Health Organization proposed a definition of health as “a state of complete physical, mental, and social well-being, not merely the absence of infirmity or disease.” While some have criticized this definition as impractical, I agree with it.

Jared doesn’t check all three of those boxes daily, but he does like to tell me that, all things considered, he’s happy with his life. After all, being born with hemophilia means that he has no other life to compare his current one with. He’s never experienced the kind of life most people would call “healthy,” so he can’t know if it would be any better than the life he’s living now.

In some ways, I think Jared’s health is better than it used to be. He’s gotten much better at self-infusion, and I’ve seen his confidence levels rise because of it. Learning to treat himself has been liberating, as he no longer needs to depend on others for his treatment. He’s able to work full time, and he’s about to start a new business. He has a family that loves him and the support of good friends.

Holistically speaking, he might be doing quite well.

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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