Holding Out Hope When Changes Occur

Alliah Czarielle avatar

by Alliah Czarielle |

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My husband, Jared, and I are on the cusp of making a major life decision.

This decision had always been part of our long-term plan. We just didn’t expect it to happen so soon. Still, one event led to another, and we found ourselves standing before the option we are exploring at the moment.

I am not yet prepared to talk about the specifics of the change, due to the complex emotions involved. But I am not here to talk about that. I am here to talk about change as a constant in a chronically ill person’s life.

When your spouse has a chronic illness, you get used to surprises now and then. One moment, they’re mobile and having fun with their loved ones. The next, they might be confined to their bed, lamenting their lack of “productivity” in a conventional or economic sense.

It can be heartbreaking to see a loved one in that situation. But we must hold on, get a handle on our emotions, and hold out hope for that person, trusting that they will be fine again, no matter how unlikely it may seem right now. This is merely a glitch, a blip in their system — and it won’t be long before “regular programming” is restored.

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Jared’s life is often filled with surprises. These small surprises — like a sudden bleeding episode, or an emotionally imbalanced day that leads to a series of seizures — do throw our lives off balance for a while. But we cope by finding ways to keep living for the present.

Life with chronic illness is rife with instability. In some ways, knowing that changes are inevitable with hemophilia makes them easier to weather, but not necessarily easier to confront. After all, change can be scary. The prospect of venturing into unknown territory may induce feelings of uncertainty.

Jared has the benefit of knowing what to expect from a bleeding episode, but there are times when “familiar” bleeds still catch him off guard. Injuries that were previously easy to treat could become chronic and persistent the next time around. We still need to be vigilant and have our treatment options ready at all times.

Facing the reality of change can be difficult. Jared often admits to me that he doesn’t always meet bleeding episodes with acceptance. When unexpected changes in our daily routine arise, it can be tempting to think in terms of “what could have been,” rather than embracing “what is.” But this kind of thinking is problematic because it denies the present reality. And when one denies reality, they are likely to experience more pain. They will remain stuck in a state of confusion and anguish, unable to move forward, make peace with the situation, or figure out ways to get through it.

I’m still learning how to deal with uncontrollable situations that arise due to Jared’s condition. I do know, however, that these are merely a part of his reality, and I must accept them if I want to stay happy. When the winds of chronic illness once again blow dark clouds into his usually bright skies, I simply hold out hope for him — the same way I hope that we will weather the present changes in our life with hemophilia.

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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 Services, and are intended to spark discussion about issues pertaining to hemophilia.

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