Sarcoidosis Walk
I met C today at the 2nd Annual Long Island Sarcoidosis Walk. She described her own experiences with sarcoidosis. Some notes before going back to cardio study.
1. Doctors inspecting her wrist (for example) and acting like the rest of her body didn't exist
2. The relief of a correct diagnosis after years of misdiagnosis, of being dismissed for being "depressive" or not exercising enough.
3. Feeling like she was not being heard, like the doctor walks into the room already certain of the diagnosis.
4. Not knowing how to explain her condition to co-workers, etc. "I just haven't been feeling well for a while." The difficulty of communicating invisible pain.
Note to self about talking to patients: It would have been nice to have learned more about her life beyond illness. When she mentioned that she graduated from Stony Brook all those years ago with a bachelors and then masters, I wish I had asked her what she had studied, what she had earned her masters in. Instead, I expressed some surprise at her class (of '96), and that was the abrupt end of our conversation.
The walk seemed like as much an awareness or outreach event as it was an opportunity for sarcoidosis patients to see each other -- not even by swapping stories, necessarily, but just seeing other understanding, sympathetic bodies and not feeling so alone.
Interestingly -- perhaps due to local demographics and/or the kinds of socioeconomic groups that are reached or that can participate in a $25/person activity -- most of the folks there today were white. There was perhaps one black family. Really made me aware that, despite what Robbins says about the typical presentation (African American, female), this condition can manifest in so many ways.
Continue to consider:
1. The art of interview (medical interview, personal interview, etc) -- ways to identify and draw out an person's story.
2. What researchers and doctors need to know about sarcoidosis to push the medicine further, to make progress toward a cure.
1. Doctors inspecting her wrist (for example) and acting like the rest of her body didn't exist
2. The relief of a correct diagnosis after years of misdiagnosis, of being dismissed for being "depressive" or not exercising enough.
3. Feeling like she was not being heard, like the doctor walks into the room already certain of the diagnosis.
4. Not knowing how to explain her condition to co-workers, etc. "I just haven't been feeling well for a while." The difficulty of communicating invisible pain.
Note to self about talking to patients: It would have been nice to have learned more about her life beyond illness. When she mentioned that she graduated from Stony Brook all those years ago with a bachelors and then masters, I wish I had asked her what she had studied, what she had earned her masters in. Instead, I expressed some surprise at her class (of '96), and that was the abrupt end of our conversation.
The walk seemed like as much an awareness or outreach event as it was an opportunity for sarcoidosis patients to see each other -- not even by swapping stories, necessarily, but just seeing other understanding, sympathetic bodies and not feeling so alone.
Interestingly -- perhaps due to local demographics and/or the kinds of socioeconomic groups that are reached or that can participate in a $25/person activity -- most of the folks there today were white. There was perhaps one black family. Really made me aware that, despite what Robbins says about the typical presentation (African American, female), this condition can manifest in so many ways.
Continue to consider:
1. The art of interview (medical interview, personal interview, etc) -- ways to identify and draw out an person's story.
2. What researchers and doctors need to know about sarcoidosis to push the medicine further, to make progress toward a cure.
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