The high costs of living with sickle cell disease

For me, stress is one of the biggest triggers of sickle cell crises. As a child, it wasn’t easy to identify when or why I was stressed. Although I try to do this now as an adult, I tend to ignore stressors until it’s too late.

Stress can come in many forms, such as physical, mental, or environmental, but today I want to highlight the financial stress of having a chronic condition.

The costs of living with sickle cell disease vary depending on the person, their health status, and where in the world they live. For example, here in the U.K., we do not pay for admission to the National Health Service, which eases the financial burden. But medical services can be extremely costly in other countries.

I’ve been thinking about ways I can reduce the following financial stressors in my life.

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Career

While many people face financial stress, for me, it largely stems from needing enough money to buy medication, pay for treatment, and care for my health. Therefore, in choosing a job or career, I have to ensure the pay is sufficient to cover these expenses.

However, I also need to be mindful of the work-life balance to avoid a surplus of stressors and potential crisis triggers. This isn’t always easy, as every job comes with some amount of stress, and many workplaces aren’t overly accommodating of people with chronic conditions.

Hospitalizations

Depending on where you are in the world, hospital costs are a financial burden for many. In my travels abroad, I’ve had to be wise about what I can expect to pay for healthcare in different countries. When I was a teenager, I’d take the risk of not getting travel insurance, but this came back to bite me on every single trip.

These financial risks didn’t impact me as much when I was younger, but they did affect my caregivers.
Now, I make sure to always have some type of health insurance so that I’m not stressed by bills from future hospital admissions. Although insurance is an additional cost, and it can feel like money wasted when I don’t use it, I’ve realized that my condition is unpredictable and a crisis can happen anywhere, anytime.

Medication and vitamins

Many sickle cell patients take pain relief medications and supplements daily in order to function. It is an unavoidable cost with sickle cell. I tend to buy many of mine in bulk, or I’ll sign up for automatic refills. This reduces overall costs and allows me to budget, as I know what my medication will cost over time.

Diet and exercise

It is well known that keeping active and eating well can improve overall well-being and help reduce stress. Being more active has resulted in a marked reduction in my daily pain and improvement in my overall well-being. However, exercising and eating a nutritious diet bring additional costs that can increase the financial burden of sickle cell. In this scenario, I must consider that the benefits outweigh the costs, as better health means fewer hospital expenses.

Travel

I enjoy traveling, but to avoid stressors and crisis triggers, I must incur significant expenses. For example, I’ll pay for extra legroom on flights to maintain good circulation in my legs, which can prevent blood clots or a crisis. I have to budget or put extra money aside to be able to do things I enjoy.

Unfortunately, there’s no easy solution for financial stress; it’s unavoidable for most people. However, identifying possible stressors and preparing for them can help me better manage my overall health.

Note: Sickle Cell Disease News 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 other 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 Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.