Options exist even when hemophilia makes you feel trapped
Getting the proper information, and getting properly treated, are paramount
It was a sunny, gorgeous day, and I was meeting a friend at one of the most beautiful places in California, where the Klamath River feeds into the Pacific Ocean. River otters and sea lions gather there to feed off salmon. Imagine our luck: The parking lot was open! We didn’t have to use a small turnout and walk!
We spent hours watching the animals and the crashing waves. Later, we returned to our cars and found an empty lot and an eerie silence. The gate was closed and I noticed it had a lock. Large boulders surrounded the entrance. We were trapped!
After an initial panic, I called the sheriff’s department, but this location was a ceremonial space owned by a local Native American tribe. The deputy called the tribal police, but it’d take an hour for the one person in the area with the key to come free us.
At that point, thankfully, I saw humor in the situation and apologized profusely. The parking lot had been opened for a ceremony, but I’d mistakenly entered it and parked. I’m so glad they were gracious about it. My friend and I made the best of it, getting out our snacks and settling in for more time to hang out and talk.
Perception versus reality
This experience was a reminder that I’ve felt trapped many times in my hemophilia journey. I spent years limping and finding myself in constant pain from what I knew was a knee bleed. Why? Because I couldn’t find the care that I needed.
After several incidents when I felt I needed better care, I found myself at the first national conference for women with hemophilia. (It’s now called the National Conference for Women and Teens with Hemophilia and Rare Factor Deficiencies.) As I wrote in 2019, this conference was a life changer for me. Most importantly, I learned I wasn’t trapped!
A doctor there referred me to a hemophilia treatment center with a clinic for women with bleeding disorders. They ran tests, and now, I’m on factor VIII prophylaxis to prevent recurrent knee bleeds and am free from the constant pain I once endured.
Back at the lot, after 45 minutes of waiting for the key, I got a call from the deputy, who was giggling. “Shellye, are you sure you’re locked in that parking lot?”
“Oh no!” I immediately exclaimed and burst out laughing. I ran to the gate and put my hand on the lock and the pin. That’s when I discovered that the pin needed two locks, one on the top and one on the bottom. But there was no bottom lock. I’d been free to go the entire time; I just didn’t know it. My perception and the reality hadn’t lined up.
When my hemophilia care isn’t going well, I find it easy to feel trapped. When the pattern continues over time, I have to remind myself that I always have options. Using them, on several occasions, has helped me free myself from being stuck. I’ve asked for a new doctor, spoke to a social worker, and reached out to a local hemophilia chapter for support. We are not alone, and help is available.
Sometimes our circumstances make us feel trapped, but I learned my perception might not be accurate. I’ve been able to free myself more often than I expected through better understanding and using my options and resources.
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.
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