Finding a good doctor makes all the difference when facing unknowns

I recently wrote a column about how I don’t really feel “sick” with Gaucher disease. Looking back, though, I don’t think that column told the whole story.

I’m currently dealing with some other medical issues, and when you already have a chronic condition, everything somehow feels connected.

A few months ago, I was hospitalized due to an inflamed optic nerve. Thankfully, that resolved itself, but during a follow-up appointment, my ophthalmologist discovered bleeding in my retina. Since no one could figure out why, I was referred to a hematologist.

With Gaucher disease, the body usually has a harder time clotting blood, so no one really expected I’d end up being diagnosed with a blood-clotting disorder. But after blood work, it now looks like I do have one.

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Being sent to a hematologist felt really daunting. I’m used to working with my Gaucher specialist, whom I’ve known for years. Even though I don’t really have symptoms from my Gaucher disease, it was scary to hear that there might be something else going on. It’s frightening to not have answers and frustrating to keep getting sent from one doctor to another, wondering what they’ll find next.

My eye isn’t improving, I’m still waiting for additional blood test results, and I need to meet with my Gaucher specialist to make sure any future treatment is safe alongside Gaucher disease. The uncertainty has been one of the hardest parts.

But after all of that, what has stayed with me most isn’t another diagnosis or another test result. It’s the hematologist herself.

The power of words of encouragement

I walked into that appointment anxious and full of questions. I was greeted by a doctor who smiled, had a positive attitude, and projected calm confidence. She didn’t minimize the situation or make unrealistic promises. She explained the risks honestly, answered every question, and reassured us that she would monitor everything closely and that, with the right treatment, I could expect to do well. My husband and I left that appointment feeling so reassured.

We’re supposed to visit family in the U.S. this summer, and I was worried that flying wouldn’t be an option because of the increased risk of blood clots. Instead of telling me all the things I shouldn’t do, she reminded me that I still need to live my life. Yes, I’ll probably need medication. Yes, I’ll need to take precautions. But she encouraged us to go on the trip and enjoy being with our family because that’s important, too.

It made me realize what a huge difference it makes when a doctor has good energy.

Of course, medical knowledge and experience are incredibly important, too. But sometimes leaving an appointment feeling hopeful is equally vital. As patients with chronic illnesses, we often spend years focusing on lab values, scans, medications, and treatment plans. Those things matter immensely. But so does the person delivering the news.

A doctor’s knowledge can guide your treatment, but their attitude can shape how you carry that diagnosis long after you’ve left the office. A few words of encouragement won’t change the blood test results, but they can change how you face them.

The truth is, she didn’t have all the answers that day. I’m still waiting on more test results, and I still don’t know exactly what comes next. But she gave me something I needed just as much as answers: confidence that we’ll figure it out. Sometimes, that’s exactly what a patient needs.

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.