When the doctor says they don’t need to see me anytime soon
Health can also be about successfully managing what's wrong
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When you live with a chronic illness, doctor appointments become a regular part of life. Some are routine. Some bring answers. Others bring more questions than you walked in with.
Over the past few months, I’ve had more than my fair share of them. What started with one unexpected medical issue led to another. Recently, I was diagnosed with antiphospholipid syndrome (APS), a blood-clotting disorder that I never expected to have. Suddenly, there were more specialists, more blood tests, more follow-up appointments, and more uncertainty.
It’s amazing how quickly uncertainty settles into your everyday life. You begin to expect every appointment to uncover something new. Even before the doctor walks into the room, your mind starts preparing for what they might say. Living with that sense of anticipation can be exhausting, even if you don’t realize how much you’re carrying.
Pleasantly surprised
Today, I had my routine Gaucher disease appointment. I wasn’t quite sure what to expect.
Instead, I was pleasantly surprised. My Gaucher disease is stable. My numbers look good. My overall health looks good. Because I’m being closely followed by my hematologist and following the treatment plan for APS, there’s nothing else my Gaucher specialist is concerned about right now. In fact, he doesn’t even need to see me again anytime soon.
I don’t think I realized how much I needed to hear those words.
Living with Gaucher disease has taught me that healthy doesn’t always mean the absence of a diagnosis. I still have Gaucher disease. I still have APS. But health isn’t always about having no issues. Sometimes it’s about knowing that the conditions you have are being managed well. It’s about having a plan. It’s about trusting the doctors caring for you and leaving an appointment without carrying home another layer of worry.
As I walked out of the clinic, I felt lighter than I had in months. Not because everything is perfect, but because so much of the uncertainty had finally been replaced with confidence. There is something incredibly freeing about hearing that, despite everything, you’re doing well. I hadn’t realized how tightly I had been holding onto all of the what-ifs until I finally had permission to let some of them go.
For a while, it felt like every appointment raised another question. This time, I got permission to stop holding my breath.
I know there will be more appointments in my future. That’s simply part of life with a chronic illness. There will probably be seasons of uncertainty again, too. But today reminded me that appointments don’t always have to end with more fear. Sometimes they end with reassurance. And after months of waiting for the next piece of bad news, reassurance can feel like one of the best forms of medicine.
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.
