Understanding pain is difficult, since it’s hard to put into words
What I've learned about my son's joint bleeds from how he describes them
What does your pain feel like? Is it burning, sharp, pulling, shooting, or achy?
Describing pain is difficult. In fact, many words used to describe pain are metaphors or similes: It’s like being stabbed by a knife or burned by a hot stove, for example. Yet a lot of people haven’t experienced a knife stabbing them or a burn from a hot stove. It’s frustrating for patients to describe what they’re feeling because no words can genuinely capture the pain when it takes over a person’s body.
When my youngest son, Caeleb, was in elementary school, he experienced a terrible season of joint bleeding. Caeleb lives with severe hemophilia A with inhibitors; his journey with hemophilia isn’t a textbook example. The complications he endured resulted in severe damage to his right knee and right ankle. Every bleed caused pain that was often uncontrollable. Every bleed ate away at his once-healthy joints.
How does a little boy describe the pain?
My son’s pain
Pain is an individualized experience that cannot be shared. For that reason, so many people have a difficult time believing that it’s real. Pain can be life-changing and debilitating. I witnessed my son, night after night, screaming and crying in pain when narcotics wouldn’t help. As a mom, seeing my son hurt that way was devastating.
Caeleb had recurring joint bleeds, eventually developing an active bleed at least once a week. Yet sometimes, we had difficulty identifying if he was bleeding or having arthritic pains in his joints. When Caeleb was about 6 years old and his bleeds were an uninvited but constant companion, I realized I needed to find a way to help him express his feelings.
Sitting with a child and asking questions about pain isn’t an experience any parent wants to undergo. When Caeleb began to have pain one morning, he used the word buzzy.
“Buzzy like a bee sounds?” I asked.
When he emphasized the “buzziness” of his ankle, I began to see his joint swelling. Buzzy equaled bleed.
The next time Caeleb complained of pain, I asked if it felt buzzy. When he said it wasn’t, I tried to find another word. I don’t know how I explained the word achy, but that’s the word he used when his arthritis began to flare.
Buzzy and achy are still the words he uses as a 17-year-old young man, and they help him determine how to treat his pain.
Pain is not a visible condition, and too often, people are dismissed when they talk about their physical pain. September is Pain Awareness Month. Take a moment to visit the U.S. Pain Foundation’s website and read about the need for research. The impact of pain in America is tremendous.
And for those living with hemophilia or another bleeding disorder, at least if they’ve experienced severe bleeding and complications, pain is constant.
Reach out to someone you know who lives with chronic pain. Listen to their stories. Being present and listening is one of the best gifts that somebody can give.
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.