How to Help Someone Who Is Chronically Ill

Alliah Czarielle avatar

by Alliah Czarielle |

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Helping others is nice. On the most basic level, helping another person can trigger positive emotions. It also creates a sense of belonging and enables one to connect with their community. And from a big-picture perspective, it gives one a sense of purpose, as they are contributing something good to the world.

As a family living with chronic illness, we’ve repeatedly through been on the receiving end of others’ help. My husband, Jared, lives with severe hemophilia B and a seizure disorder. Meanwhile, I am diagnosed with chronic anxiety and depression. Sometimes, life feels like a tricky circus act where we do our best to juggle multiple balls in the air, including family, business, health, time, and relatives. But some balls are heavier than others. Inevitably, some will drop to the ground. But the show must go on, so we simply do our best to keep the remaining ones afloat.

We’re grateful for the times other people have helped us, whether financially, emotionally, or with daily administrative tasks. Assistance from friends and family has pulled us through many difficult situations.

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But sometimes, other people’s well-intended assistance can unintentionally burden the chronically ill person and their loved ones — especially if the help offered is not the kind of help that’s needed.

So, how can a person effectively extend help to a friend or family member with chronic illness?

You can lighten their load, but you need not do everything for them.

When physical symptoms such as pain strike, a person might not be able to do things as effectively as usual. This can be disappointing to them.

However, they may feel even more disappointed if they start to label themselves as “incapable” or “useless.” This can happen when other people take on all of their tasks while they are debilitated.

I like to encourage my husband to keep doing things he likes, even when he is bedridden with a bleed. As long as he is giving the injured part enough time and rest to fully recover, he can do many things. Even doing simple chores can help empower a person with chronic illness when they are physically limited.

Instead of trying to take away one’s problems, help them find the solution.

Living with chronic illness is hard. But “adulting” alone brings its fair share of challenges, and a person with chronic illnesses or disabilities isn’t shielded from them. At some point, they must face these challenges and adapt to life with their conditions, because the real world stops for no one.

Taking away a chronically ill person’s hardships may seem ideal, but in reality, this is a mere Band-Aid. Some hardships are necessary for people to grow through. Chronically ill or disabled people are no exception. They must be enabled to deal with the challenges they are bound to face. This is the only way they can transcend their illnesses while still respecting their limitations.

Never assume that a chronically ill person is having a hard time.

Just because someone appears to be struggling doesn’t mean they actually are.You’; Perhaps they’re simply working on becoming more capable or independent. These things take time and practice.

When Jared was a teenager, an adult scolded him for carrying an object that appeared “too heavy.” Perhaps they were simply concerned that he would get injured and develop a bleed. But this didn’t sit well with him because, in reality, he is physically fit and used to carrying heavy things. If the adult had simply asked him if he needed help, the incident might not have been so awkward.

If in doubt, always ask. “How can I help?” is a powerful phrase. Listen to the other person, and try to see things from their perspective.

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

Comments

Bea Paulo avatar

Bea Paulo

I have been reading your posts and I found myself significantly related to you. I have severe anxiety and depression whilst my partner has haemophilia B too. I am looking forward to relate and learn more about how you and your husband deal with everyday life especially with these disabilities present in our lives.

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Alliah Czarielle avatar

Alliah Czarielle

I feel you! Living with a partner with hemophilia can be enjoyable and challenging at the same time. With their condition being so rare it's hard to find someone who can fully understand the experience, and that can contribute to feelings of loneliness or isolation -- which, in turn, can make depression and anxiety worse. Please don't hesitate to reach out to me if you need someone to talk to, or if you'd simply like to chat about things. I'd like to know where you're from, and what it's like to deal with hemophilia where you are!

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