How discussing my priorities with doctors can lead to happiness
Without these discussions, the goals of patients and doctors often clash
Last Monday, I decided not to listen to political podcasts. I get FOMO (“fear of missing out”) when it comes to political news, so I keep listening to it, even though it doesn’t nourish me. In fact, things I have little or no control over tend to upset me.
I gently remind myself to focus on my sphere of influence. My sphere is rare disease, specifically Friedreich’s ataxia (FA), and even more specifically, mental health.
I was richly rewarded for that choice. Instead of feeling anxious, I felt inspired and engaged. I listened to one of my favorite podcasts, “Everything Happens with Kate Bowler,” which featured an interview with surgeon and public health leader Atul Gawande, whom I have long admired. In addition to avoiding anxiety triggers, I also discovered my topic for this week’s column.
Gawande said that patients with a difficult diagnosis who discuss their priorities with their physician are less likely to be depressed. Additionally, he mentioned that without such discussions, the goals of patients and doctors often clash. Doctors tend to focus on minimizing risks, which may not align with what brings patients joy. This misalignment can unintentionally cause the patient to suffer.
I had a light bulb moment when I heard that. I never talk to my doctor about my priorities — what I want to be able to do that makes me happy and gives my life meaning. I learn about the latest research or how FA works, but never about how I can prioritize my care to stay happy.
My caregivers need to know my priorities, too
Do I talk about my priorities to my family members, who are my main caregivers? Yes, but not directly about how I want to be cared for in order to do the things that bring me joy. For example, I’ve mentioned that I love to travel and have adventures, but I’ve never said that means I need to have a companion. I’ve always thought this was obvious, but now I realize that I need to be direct with my family about what traveling with FA entails. I’m not saying I should just state my desires and then they should fulfill them, but rather, we should negotiate what works for everyone.
I understand that my caregivers prioritize my physical safety more than I do. I’m comfortable taking more risks than they are. For example, my family wasn’t happy that I went hang gliding — twice. It was fun! It was tandem, and I was just along for the ride, but I still loved it.
Gawande is a physician, so he was talking about doctors asking patients about their priorities. But what if patients made sure that was part of the treatment plan? I know we have a lot to do, and it’s hard for the onus to be on us for yet another thing, but if it leads to a more fulfilling life, I’ll do it.
I’m going to seek help, though. A caregiver always accompanies me to my annual appointment with my neurologist, who is my locus of care for FA. I find that there is a better exchange of information when I have a caregiver with me to help me inform my doctor and ask questions. I often forget things I want to ask, my caregiver notices things I don’t, and they have questions, too. So this year at my annual checkup, I’ll make sure to discuss my priorities by asking my caregiver to remind me.
Right now, I’m preparing to plant some bulbs. Gardening brings me joy. No one considers it too risky, even though I’ve gotten my wheelchair stuck in the mud and needed help more than once.
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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