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Bridging the Emotional Gap Between Patients and Doctors
I’m hard-pressed to find anyone who hasn’t had an unpleasant experience with a doctor in their lifetime. In the rare disease community especially, I have heard some horrible anecdotes. Everything from feeling ignored to being told life-changing news without an air of concern. I’ve heard of patients who were laughed at, dismissed, and treated in very unprofessional ways.
Likewise, I have heard from basically every doctor who has been willing to open up that they are exhausted beyond belief, overworked, overstressed, and suffering from compassion fatigue. It can be impossible to treat every patient like a unique and interesting case when you are so overwhelmed by the relentless onslaught of traumatic stories in your exam rooms.
In my recent column, I encourage both patients and providers to see each other as human beings. Let’s make an effort to meet each other where we are emotionally each time we step in the exam room. Click here to read more.
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4 Replies
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I was sent to the ILD clinic at the hospital by my radiation oncologist after my post radiotherapy pneumonitis showed up on a chest CT as pulmonary fibrosis. It was a bit of a shock having to turn my mind from worrying about stage 2 breast cancer (with an 85% five year survival rate) to something worse. My pulmonologist answered my questions about progression and what else might happen in a rather unique way. Since I am a high school math teacher, he told me that his daughter in fifth grade had come home from school one day all excited. She had said, “Dad, math is magic! You can use it to solve all kinds of problems!” The doctor then said to me, “Math may be magic but medicine is not.” I smiled and realized that he actually had no answers since the trajectory of this disease is so varied.
Because I am in a small subset (about 200 cases) of a rare disease group in the US, I have found that I have to be proactive and explain what I have been diagnosed with to other medical providers. My PCP thought that the traction bronchiectasis noted by the radiologist on my CT report was like the bronchiectasis of COPD which is much more common. I figure that since I was unaware of PF before I was diagnosed with it and it is relatively rare, it is something many medical professionals may not be familiar with.
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I’m fortunate to be under the care of Drs at UCSF, the major medical provider in San Francisco, with a national A+ reputation. I have three doctors: my PCP who specialized in Geriatrics (I’m 76), one for IPF and one for Pulmonary Hypertension. I will have to say that my PCP is perhaps the best I’ve had in my life. During my initial meeting with him, he listened for almost 2 hours, something I’d never encountered. Most recently, when I thought my IPF was seriously deteriorating, and I thought my end was near, he did blood work that showed I actually had anemia, causing my hospitalization for a week with blood transfusions, etc. I had a full recovery and am going stronger than ever. My pulmonary Drs are also good, and I can’t complain. Sometimes I’m a bit irked by support staff, but I guess that comes with the territory, or I blame myself for getting grouchy in my old age.
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Hi Phil, I’m glad you’ve had mostly good experiences with the care at UCSF. We also have felt truly lucky to be under their care. The ILD and transplant teams are phenomenal. We have had some minor issues with support staff as well, but I think they have been going through a pretty big staff overhaul the past few years (lots of long-time employees moving on and new folks struggling to fill their shoes is the impression I get). But regardless, they’re always open to communicating with us up the chain of command until questions are answered and appointments are scheduled correctly, and so on.
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Hi Margaret, thank you for sharing. It sounds like you had a pretty good rapport with the pulmonologist, and I hope that you have had good interactions with the other healthcare providers that you’ve had to explain your situation to. It can be hard to advocate for ourselves when our diagnoses are so unique and uncommon. Do you have any tips for those who have a harder time communicating with doctors?
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