Living a ‘Demi-normal’ Life With Chronic Illnesses

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by Alliah Czarielle |

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“Demi-normal.” It’s a term I’ve coined to describe how my husband, Jared, and I both live with chronic illness.

Most people are familiar with the prefix “demi-,” meaning “halfway,” “almost but not quite,” or “to an inferior degree.” For instance, a demigod‘s status is above man’s, but not quite divine.

The prefix “semi-” has essentially the same meaning: “partial” or “any degree less than whole.” When someone says they live semi-normally, this suggests that their life isn’t entirely normal.

While demi-normal could be used to mean the same thing, Jared and I have given this less common term our own definition: To live demi-normally means that our life is entirely normal until it’s compared with someone else’s.

For a bit of background, Jared and I both struggle with physical and mental illnesses. Jared has severe hemophilia B and a seizure disorder, while I am newly diagnosed with attention-deficit/hyperactivity disorder and bipolar disorder. Both of us carry PWD cards, which identify us as people with disabilities, and take medication regularly. And when Jared gets his occasional bleed (approximately once a month), he must infuse clotting factor all by himself.

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To an outsider who has zero experience with chronic illness or disability, this probably doesn’t sound normal. Many people already feel that taking medicine when they’re sick is a nuisance. I know, because I used to think this, too, before my psychiatrist prescribed me medication.

Remembering to take medicine when you’re down with a cold is a small, often short-term adjustment. But what if you must adjust your entire lifestyle to manage your chronic illness?

For us, making adjustments has become routine. Mundane, even.

Factor infusion? Just a small disruption in our everyday schedule. If the bleed is minor, things should fall right back into place in a matter of hours. If pain enters the equation, it might take a bit longer to reach equilibrium. But we’ll get there.

And if Jared has a seizure? They’re annoying — more annoying than bleeds, in Jared’s book. But they are very much a part of his life, and he must accept them while trying to keep them under control.

Ironically, my anxiety attacks and mental breakdowns tend to be more bothersome, especially if they create a rift between Jared and me. Such disturbances are often far more complicated to solve and can also pose a threat to our relationship.

Thankfully, we find ways to resolve our issues, even if it takes several days. Every couple goes through rough patches, after all. It just so happens that we’re a couple with chronic illnesses.

Overall, our life is quite normal, at least from our perspective. We wake up (often with a bit of struggle), make breakfast, play with our daughter, ease into work, get lazy at times, and rejoice at the day’s end. Pretty typical, no?

Like many, we work for money, explore our city, take occasional vacations, and watch our favorite shows. We’ve also done “normal” things in the past, like going to regular schools and working as regular employees, taking on the same workload as everyone else.

Plus, the world doesn’t stop for us just because we’re chronically ill. We may get discounts now and then, but they’re not particularly large in the big picture. So we hustle and work as hard as we can manage — with barely any special considerations.

We only hit a roadblock when we begin comparing ourselves with others. Then, we may begin to feel a little bit less than normal. We might question ourselves for a moment and feel paralyzed or lost, devoid of the energy to go on.

But then the dust settles, and things return to our normal. We’re fully aware that others don’t exactly see us as “normal” people, even though our lives aren’t so different from everyone else’s. We’re just coping and thriving in the ways we’re able.

Just because we’re disabled doesn’t mean our lives are only partially normal, let alone “less” than others’. We have our own normal — and by that standard, we’re doing just fine.

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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