How to foster a mutually beneficial patient-provider relationship

My eye-opening conversation with social worker and FA patient Jean Walsh

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by Elizabeth Hamilton |

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I love my “FAmily.” The network of incredible individuals that Friedreich’s ataxia (FA) has brought into my life since my daughter’s diagnosis has been such a blessing. I often say, “I hate this disease, but I love my people.”

One such person is Jean Walsh. I met her while helping with a presentation for an FA symposium in Philadelphia in 2022, and immediately felt drawn to her. She is a social worker with incredible compassion, wisdom, and insight, as well as someone I feel privileged to call a friend.

One thing that all of us in the FA community have in common is our frequent visits to see medical professionals. I asked Walsh to share her insight into managing these appointments and the critical relationships we form with providers. Excerpts from our email conversation follow, with light editing for clarity.

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Attending to my needs amid the stress of a medical conversation

EH: How do you feel when you go to the doctor?

JW: I always find myself tense when I go to the doctor’s office, even with doctors I love.

Why do you think that is?

I was 19 when I was diagnosed with FA. That was about 41 years ago. Since then, I’ve been to hundreds of doctor visits — many scary with bad diagnoses handed out. My initial diagnosis in 1981 can be summed up in this list: Friedreich’s ataxia, no treatment, no cure, wheelchair by 25, dead by 35.

My parents and I were zombies. Yes, we were traumatized. People weren’t using the idea of trauma so much then, so we were just calling it shock.

The doctor was a superb diagnostician but had a lousy bedside manner. It is no wonder that I am anxious about going to the doctor. My family and I were given the worst news of our lives by a doctor. Sound familiar? Your story is probably different, but trauma at the doctor’s office is likely familiar for everyone with an FA diagnosis or an FA diagnosis of a loved one. You may not feel you want to or should recognize our FA diagnosis as trauma, but it [was]. Recognizing it as such gives us power over the patient-medical provider relationship.

So how do you manage this critical relationship?

I manage it by trying to be a good and likable patient. Sometimes I gloss over the hardships I have. I try to treat the doctor as a human being with a life outside of work. This relationship is incredibly valuable to me. I make sure I attend to it. Not complaining or glossing over things is something I am trying to stop doing. I have a brutal disease and have for over 40 years; it is normal to have issues.

[According to a 2019 article published in the] Canadian Medical Association Journal, “Most people want their doctor to think highly of them. They’re worried about being pigeonholed as someone who doesn’t make good decisions.”

Trust is fundamental on both sides of the doctor-patient relationship.

How do you work to be honest and transparent at these appointments?

Honestly, I do have to force myself. What usually works for me is remembering that the doctor can’t help me if I don’t tell them what is going on. If I can’t be honest, my doctor can’t trust me. Two concrete things I do are:

  • Write questions/concerns down and bring them to the visit
  • Bring a loved one into the appointment to help me be real and ask their own questions (It is not my job to absorb everything so I can pass it on to a loved one!).

How would you advise readers to manage this relationship for themselves or a loved one?

Did you know there is an entire profession dedicated to helping patients navigate the nonsensical healthcare system that we have [in the U.S.]? It is called patient advocacy. Essentially, a patient advocate is someone helping you, the patient, get good care by helping you navigate the healthcare system, from interacting with doctors to your insurance company. This is a great little article with more details about a patient advocate’s role. Many of us cannot afford a patient advocate, but making your way through the healthcare system is hard. It is not your imagination. I get it, you have a lot to attend to with your health already. Paying attention to this relationship is likely to provide substantial health benefits.

What would be your two-sentence summary to those who are reading this?

Remember, it is the job of the healthcare provider to help you be healthy. Don’t be afraid to ask for what you need!

Thank you so much, Jean, for taking the time to share your experience and wisdom with us!

Note: Friedreich’s Ataxia 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 another 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 Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.


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