When you’re stuck on the hamster wheel of figuring out what’s wrong
It's exhausting to go from doctor to doctor and still not have clear answers
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When you live with a rare disorder and other chronic conditions, as I do, there’s a certain type of exhaustion that comes from constantly going from doctor to doctor. It’s not just physical exhaustion, but also mental.
I start to feel like my whole life revolves around appointments, tests, and waiting for answers that never really come. I’ll be sent for one test, and then another, then to a different specialist, and another one after that. Every time, I’ll think that maybe this will be the one who explains what’s going on — and then it isn’t.
Lately, a big part of that for me has been ongoing eye issues. It’s exhausting to keep showing up and going through the same process over and over again without anything changing. I spend a lot of time and energy just trying to figure out what’s wrong, and when I don’t get any clear answers, it can wear on me.
At the same time, my Gaucher disease comes with its own set of challenges. My biomarker levels started off really high, and I’ve been diagnosed with osteoporosis. With time and treatment, I’ve seen immense improvement. These things are clearly connected to Gaucher disease. But so many of my other tests come back completely normal. On paper, I’m “fine.” And that disconnect, between what shows up in tests and what I’m actually experiencing, makes everything feel more complicated.
At one point, my Gaucher doctor even called me a “medical mystery.” It’s a strange thing to hear about yourself because it doesn’t feel like a mystery when you’re the one living in it. It just feels like something is wrong and no one can fully explain it. And when dealing with multiple things at once, some that are understood and some not, it can feel even more confusing.
That disconnect is probably the hardest part for me: being told I’m healthy but also that something is wrong. I don’t know if I’ll ever get a clear answer. I’m starting to realize that maybe part of the process is learning how to be OK in that space, to give myself grace for how hard it is to keep going from appointment to appointment, to continue advocating for myself, and to keep searching for answers.
For now, I’m trying to take it one step at a time, one appointment at a time. I’m reminding myself that even if I don’t have answers, what I’m feeling is real. And it’s OK to move through the process slowly, with a little more patience and compassion for myself along the way.
Note: Gaucher Disease News 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 other 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 Gaucher Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Gaucher disease.
