What makes a good doctor? For me, it’s our relationship

A willingness to listen and respect my view has helped in my PNH journey

Erin Fortin avatar

by Erin Fortin |

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Throughout my past few years of living with paroxysmal nocturnal hemoglobinuria (PNH), I’ve appreciated having a solid relationship with my hematologist. I’m grateful that my appointments are open conversations rather than one-sided lectures of him explaining my disease to me. He values my input and allows me to be a decision-maker with him in planning my care.

When I was diagnosed with PNH, I didn’t have a good experience with my first doctor, who was knowledgeable but not right for me. About six months into my diagnosis, I switched to a new doctor — and what a major difference. He listened to me and answered every question I had, and would even linger in case more questions popped up. He was, and still is, exactly the type of doctor I need.

I’ve experienced two types of doctors, for the most part: one type who’s more laid back and easygoing, and tells the patient to wait and see how things play out, and another type who’ll order every test under the sun and list every possibility that’s going on, even if it causes anxiety. Neither type is right or wrong, but it’s important to figure out which type you like better as a patient.

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A graphic illustrating a woman rolling a stone up a mountain on the left side, then celebrating it reaching the top on the right side.

News flash: Not every doctor knows what a PNH diagnosis means

Having my own voice

I have great patient-to-doctor chemistry with my current doctor because of his type of care. He’s sort of in between the two types, contrary to many of my other experiences: He’s very calm in explaining possibilities to me so that I’m aware of what he’s saying, but not in an overwhelming, anxiety-triggering way. This approach works well for me so I process information without an inflated sense of urgency.

Being my own advocate and having my own voice also contribute to our partnership. He listens to the concerns I have, such as connecting to others in the PNH community, and incorporates them into my care rather than dismissing me because I don’t have a medical degree.

I was told by another patient, for example, that PNH could lead to gallbladder issues, which I mentioned to my doctor. He ordered imaging to have as a base in case I developed issues later, but it turns out I already had multiple gallstones. I didn’t realize it because the symptoms were similar to my PNH symptoms. I was so happy I mentioned this possibility to my doctor because it led to gallbladder removal surgery. I felt much better afterward.

My doctor’s knowledge, combined with my living experience, gives me full confidence in my PNH care. We can’t predict what may happen because of how unpredictable PNH is, but the confidence I get from knowing I’m in good hands makes the unknown less fearful.

Sometimes I wonder where I’d be on my PNH journey if I’d never switched doctors. Would I be as confident and, more importantly, as comfortable as I am now?

Changing your care team doesn’t have to be a negative experience. It doesn’t mean your original doctor isn’t knowledgeable or capable; it just means they’re not the right doctor for you. Finding the right doctor may be a process, but once you’re in the right hands, it’ll make managing your one-in-a-million disease a million times easier.

Note: PNH 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 PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.