The risks of comparing ourselves with others living with hemophilia

I never saw myself as an athlete. In middle school, I played volleyball, sat on the bench for most of basketball season, and played softball in the summer. As an adult, I tried Curves, Jazzercise, some yoga, and went to the gym. Then, in 2016, I made a choice that changed my life.

I was struggling to manage a hormonal condition and diabetes, so my doctor suggested gastric bypass surgery to help with weight loss. After thinking about it for a long time, I decided to go ahead with the procedure.

After losing 70 pounds, my diabetes went into remission, and I decided to make the most of my new body. I went to the gym, stuck to my bariatric eating plan, and looked after myself for the first time in years. At last, I was ready to tick something off my bucket list: running a 5K.

My husband and sons cheered for me as the race started. I wasn’t fast, and after one lap around the park, I saw others finishing their second. Soon, I was running by myself. The last lap was hard, but I kept going, even if it was slow. I finished last.

After the race, I reflected on what I had achieved and, instead of feeling proud, I started to minimize my success. I compared my time with those who had finished faster and, as a result, became discouraged. I never took into account that each person followed their own path to get there.

We’re each running our own race

Comparing gets even more complicated when you’re raising kids with hemophilia. After our sons were diagnosed, my husband and I joined a community of families living with hemophilia. We listened to their stories, learned about their treatments and challenges, celebrated their wins, and shared their setbacks. We realized we weren’t alone.

But because we were all facing the same disorder, it was easy to compare our journeys.

There was always another child whose situation appeared to be worse — more bleeding episodes, more hospitalizations, more complications, more intensive treatments, more pain, more joint damage, and more concern for their parents. At times, learning about another family’s experience made me feel thankful for what our own family had; at others, it made me minimize the difficulties our own children were going through.

I have heard parents of children with bleeding disorders say, “We’re fortunate. At least our situation isn’t as severe as …” I have said this myself, and others have said it to me when speaking about my youngest son. I can understand why. We do feel grateful when our children are in good health. We know hemophilia is unpredictable and have seen how difficult the condition can be. However, comparing our situation with that of others who have it worse can lead us to think our own difficulties aren’t significant.

There are risks in comparing our child’s experience to another’s:

• A child who’s never spent weeks in the hospital can still feel anxious about what might happen.
• A child who has fewer bleeds can still be afraid of needles.
• A child without major joint damage can still have a childhood shaped by infusions, treatment routines, activity limits, and the feeling that their body isn’t quite the same as other kids’ bodies.
• A parent can be grateful that things aren’t worse, but still admit that things are hard.

We don’t have to pick between being grateful and being honest.

Hemophilia changes a family in ways that aren’t always visible from the outside. Sometimes, one child’s struggles are more obvious or medically complicated than another’s. But there’s something important to remember.

Every child and every family living with hemophilia faces a tough journey. We don’t have to compare ourselves.

I remembered that lesson after my 5K. My determination and preparation kept me running through the last lap, even when every part of me wanted to quit. I did something I once thought impossible: I crossed the finish line. And I almost let everyone else’s finish time take that feeling away from me.

There’s no prize for suffering more than anyone else. Someone else having a harder race doesn’t make your journey any easier. And if someone finishes before you, it doesn’t mean your finish line matters less. Let’s celebrate another family’s finish line and still honor our own.

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 consult your physician or another qualified healthcare 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.