Self-care is not a luxury for people with chronic illness

Hemophilia not only brings physical hardships, but also mental and financial ones

Alliah Czarielle avatar

by Alliah Czarielle |

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I like to believe that my husband, Jared, and I have a fulfilling marriage and family life, even with chronic illness. Each day, we make intentional choices that align with what we value most: living a full and happy life.

Jared has two chronic illnesses, hemophilia B and a seizure disorder. We also happen to live in the Philippines, which is a developing country. These two factors can make it challenging to live a truly fulfilling life.

Oftentimes, we feel as though we’re stuck in a never-ending loop of physical, emotional, and financial challenges.

The infinite loop of financial and mental troubles

Chronic illness affects more than just physical health. It can also take a toll on one’s mental health and finances.

With hemophilia, factor products could cost a fortune out of pocket or take a significant chunk out of a person’s health insurance. Seeing money seemingly evaporate into thin air can be stressful. This stress is even more pronounced in a struggling economy like that of my country, where salaries are barely enough to cover our monthly bills and expenses.

In addition, managing a chronic illness can be a full-time job in and of itself. My husband describes the mental load of hemophilia management to be quite intense. He often second-guesses small things, like how he should walk, where he should step, and how he can modify his daily activities to avoid bleeds. He constantly fears experiencing yet another severely debilitating bleed, but he must also acknowledge that fear isn’t helpful for him. It’s a continuous process that goes on in the background of his mind.

These added mental demands of chronic illness can make it difficult to maintain steady employment or advance in one’s career.

Many people with chronic illnesses find that they must prioritize their mental health and well-being. Therefore, engaging in activities that bring them joy and relaxation becomes nonnegotiable. A few examples of such activities are traveling, exercising, playing sports, or engaging in a beloved hobby.

However, many of these activities come at a cost, which can add to the financial burden of managing a chronic illness. And so the cycle continues: Money problems result in mental stresses, which cycle back to money problems.

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A tricky balancing act

With chronic illness, managing one’s mental state alongside one’s finances can be a tricky balancing act. So it’s sad to hear judgments from other people who think we can’t possibly be struggling, just because they see us trying to have fun or accumulating good memories.

Social media tends to amplify this impression as well, since many people romanticize their lives online. I wasn’t aware I practiced this until I realized that I enjoyed building an online photo album of memorable experiences to look back on whenever tough times strike.

When others assume that our struggles with chronic illness aren’t valid simply because we seem to be enjoying our lives now and then, I cannot help but feel invalidated.

Self-care through destressing is the next best option for mental healthcare

Living our best lives with chronic illness can be ridiculously expensive. Therefore, we cannot understate the importance of sticking to budgets, prioritizing expenses, and trying to access free resources needed to maintain health and well-being.

However, it’s not always realistic to obtain such resources at little to no cost. Mental health services such as psychotherapy, for instance, are expensive in my country. To get a free consultation, one must wait for weeks, or even months, until a free slot opens up. This is not ideal, especially if someone is going through a mental health crisis.

Oftentimes, self-treatment is the next best resort for Jared and me when it comes to managing our overall well-being. And so we try to do things we find fulfilling, romanticize our lives on social media, and do enjoyable activities with the people we love, regardless of what it costs us.

It’s possible for people with chronic illnesses to find joy and happiness in life. By supporting their financial needs and advocating for a more equitable healthcare system, we can help ensure that everyone has the resources they need to live their best lives.

But until this becomes a systemic reality, let’s not judge people with chronic illness for doing whatever they feel is best for their overall wellness.

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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