As a hemophilia mom, I don’t believe things happen for a reason

This season, we’ve seen terrible natural disasters. Tropical storms, wildfires, mudslides, earthquakes, and flash floods have destroyed communities worldwide. Watching news reports from these places is heartbreaking. We may not know how to respond to seeing people covered in mud searching for loved ones or coming home to find only ashes.

I’ve noticed that when something bad happens, people get anxious. If the tragedy hasn’t affected them directly, they try to make sense of it. When there’s no clear reason, they sometimes say things that can hurt, such as “Everything happens for a reason.”

I don’t think that statement is true.

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Both of my sons have severe hemophilia A. When they were diagnosed, I was devastated, angry, and guilt-ridden. Someone once told me that hemophilia happened for a reason, but I couldn’t accept that idea. Did my sons deserve this? Did I do something wrong?

I had so many questions, and I tried to hold on to the idea that everything happens for a reason. Maybe it was true. But soon I realized what I really needed to get through the diagnosis.

I needed a community that understood hemophilia. I needed someone to hold my hand and offer encouragement and support. Often, my new friends would sit with me, listen, and cry because they had been through the same thing.

When someone is caught in a storm, telling them there’s a reason for the rain doesn’t help them get dry. People don’t need to know why it’s raining. What helps is offering an umbrella, a jacket, or simply holding their hand. Sometimes, the best thing you can do is stand in the rain with them.

What we might say instead

People usually say “everything happens for a reason” to comfort others, but sometimes it does more harm than good. Here are a few reasons why these words can hurt:

• These words can make someone’s pain feel smaller. They may suggest that suffering is OK because it has a purpose.
• They can shut down someone’s grief. Instead of standing with them and saying, “I’m so sorry, this is awful,” this phrase can pressure them to find a lesson in their pain.
• They can even suggest blame. People may wonder, “What did I do to deserve this?”
• This phrase assumes we know the reason, but often we don’t. No explanation can take away the fear and pain of illness or tragedy. Sometimes, things just happen.
• These words can make someone feel like they have to be grateful for their suffering. Finding meaning in pain is not the same as believing it had to happen.

It’s important to make a distinction. Instead of saying “everything happens for a reason,” we could ask, “Can we find meaning in what happens?” The first phrase looks for a reason for suffering, while the second allows us to look ahead and find meaning in our experiences.

I’ve been a hemophilia mom for more than 30 years, and there’s one truth I will always hold on to:

Hemophilia has taken our family to places we never expected. We’ve traveled, gone to conferences, and met people we never would have known otherwise, and I’m grateful for that. The pain of infusions, bleeds, and inhibitors tested us in ways we couldn’t imagine. My youngest son’s suffering was heartbreaking, and he still lives with the effects of an inhibitor. But even he says he’s learned about life through the pain.

Hemophilia didn’t happen for a reason, but I will always treasure the beauty I found in the journey.

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.