Managing finances often proves difficult in life with hemophilia

The added expenses of a bleeding disorder — beyond medical costs — are rarely discussed in our community. Yes, I’m talking about the dreaded M-word, which can evoke many negative emotions. Money affects every part of our lives, and for some of us, our relationship with it results in feelings of shame.

I have two sons with severe hemophilia, and our family’s expenses really started to mount with each hospitalization that my youngest son, Caeleb, endured. He’s now 19, but during his elementary years, he experienced frequent internal bleeding episodes that often required him to stay in the special pediatric care unit at the University of New Mexico (UNM) Hospital for more than two weeks. My wife and I took turns staying with him overnight.

I didn’t realize how much we spent during Caeleb’s hospitalizations, not including medical expenses, until I reviewed my checkbook. I divided our spending into four categories: food and drink, lodging (when we lived far away from the hospital), fuel, and extra expenses (Lego sets, transportation other than our cars, etc.). As I reviewed the numbers, I couldn’t believe how much it cost to support my boy while he was in the hospital.

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The following were our expenses for one week:

Food and drink: $210
Lodging: $490
Fuel: $160
Extra expenses: $100

Total: $960

No wonder it proved difficult to pay bills on time. Much of my income went toward medical costs and these additional expenses.

Fortunately, after we moved to the Albuquerque area — home to the UNM hospital — we no longer had to pay for nearby lodging. That reduced our weekly expenses to about $470, but we were still paying close to $1,000 every two weeks. The continual outflow of money forced us to reevaluate our household budget.

Lessons learned

Looking back on this challenging time, there are several things I wish I’d known sooner.

First, I should’ve been categorizing all of my expenditures. Although I maintained an accurate checkbook, I didn’t categorize each transaction. It was difficult to remember which expenses were related to Caeleb’s hospital stays and which ones were simply a part of daily living.

The second lesson concerned the emotional baggage that accompanies life with a chronic illness. I often felt like a fool while managing our family’s expenses, as money seemed to slip through our fingers. The mental drain of having a child in the hospital was stressful enough; I didn’t need to beat myself up over financial matters. But instead of reaching out for support, I receded into my own space, embarrassed to admit I couldn’t manage my household funds.

Finally, I wish I’d remembered to be kind to myself when the money issue reared its ugly head. The bleeding disorders community discusses numerous topics, but when it comes to financial management, many of us stop sharing for fear of being judged. We must give ourselves a break and realize that sharing with others can start an important dialogue that helps all of us.

Another way to help families struggling to manage finances is to provide more educational opportunities. Organizations including the National Bleeding Disorders Foundation and the Hemophilia Federation of America could offer symposiums where people like me could learn more about managing the costs associated with a bleeding disorder. Improving financial literacy could lead to healthy discussions and reduced shame. It’s important for members of our community to be open with one another, even when dealing with complex and sensitive issues such as finances.

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.