Being cautious about symptoms without living in fear

When you live with a chronic illness, you learn to pay attention to your body.

You notice changes. You learn what is normal for you and what isn’t. You learn which symptoms can wait until your next appointment and which ones deserve a phone call to your doctor or a trip to the emergency room.

But sometimes, paying attention to your body can turn into something else entirely.

After experiencing enough medical problems, I have found myself constantly on high alert. Every new sensation, every unusual ache, every little change can set off a chain of questions in my mind: Is this normal? Am I imagining it? Is this just anxiety? Or is something actually wrong?

And perhaps the hardest question is: How do I know the difference?

When I was diagnosed with Gaucher disease, I suddenly looked at my body differently. Even when things were stable, a new symptom could feel significant. Was it a side effect of my medication? Was it related to Gaucher? Was it a sign that something was changing?

Most of the time, there was a perfectly ordinary explanation. But once you have experienced something serious happening inside your body, it becomes difficult not to wonder whether every new sensation could be the beginning of something else.

Over the past year, that feeling has become even stronger.

After my first child was born, I dealt with an inflamed optic nerve in my eye. That led to the discovery of a blocked vein in my retina and, ultimately, to a diagnosis of antiphospholipid syndrome. What started as one unexpected medical problem became several, each leading to another question and another specialist.

It changed the way I experience my body.

Now, when I feel something unusual, my mind doesn’t simply register it as a sensation. It immediately starts looking for an explanation and usually assumes the worst one first.

A headache isn’t just a headache. A strange pain isn’t just a muscle I pulled. A change in my vision isn’t something to casually keep an eye on. My mind immediately starts running through possibilities: Could this be another clot? Is something happening with my eyes again? Is this related to Gaucher? Is this a medication side effect? Should I be going to the emergency room?

Sometimes I can reassure myself. Other times, I can’t.

Finding a balance

There is a strange tension that comes with living this way. I don’t want to ignore my body. I know that symptoms can matter, and I know firsthand that seemingly small things can sometimes lead to important diagnoses. At the same time, I don’t want to live in a constant state of fear, treating every sensation as an emergency.

I am learning that medical trauma doesn’t always look like fear of hospitals or doctors. Sometimes it looks like checking your body over and over again. Sometimes it looks like Googling symptoms. Sometimes it is lying in bed at night wondering whether that strange feeling is something you should be concerned about.

And sometimes it is simply being exhausted from second-guessing yourself.

I don’t have a perfect solution for this. I am still learning to find the balance between listening to my body and being afraid of it.

Living with Gaucher disease has taught me to pay attention to my body. My body has given me reasons to be cautious, but it has also gotten me through things I never thought I would face. It carried me through illness, treatment, pregnancy, childbirth, and everything that came after. It has healed, adapted, and kept going.

So maybe the goal isn’t to stop noticing every little change. Maybe the goal is to slowly rebuild the trust that medical trauma took away: to believe that I can handle whatever comes next without assuming that every unfamiliar feeling means something is terribly wrong.

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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.