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Today at @HopkinsMedicine I had the distinct honor of hearing the perspective of a long-time cystic fibrosis patient.
I could never do justice to the hour-long talk she gave. But I'd like to share what I learned and thought about.
Thread
I could never do justice to the hour-long talk she gave. But I'd like to share what I learned and thought about.
Thread
Other than having more #DisabledDocs, I think dedicated, non-medical time to hear patient stories is one of the most effective ways to improve the culture in medicine.
I hope my classmates hold her messages close for a long time to come.
I hope my classmates hold her messages close for a long time to come.
1. Resistance from a patient is not necessarily a bad thing.
Accepting treatment requires acceptance of illness/disability. It's not as easy as it looks, and clinicians should keep their frustrations to themselves.
Sometimes resistance is a sign of hope.
Accepting treatment requires acceptance of illness/disability. It's not as easy as it looks, and clinicians should keep their frustrations to themselves.
Sometimes resistance is a sign of hope.
2. Not every patient wants to get out of work/school.
Especially if chronically ill or disabled, the ability to still work is something we often cherish and hold with pride. Do not offer a disability letter as a present without discussing and assessing emotions first.
Especially if chronically ill or disabled, the ability to still work is something we often cherish and hold with pride. Do not offer a disability letter as a present without discussing and assessing emotions first.
3. Being a patient can be very difficult work.
This young woman told us about a morning and evening medicine/vitals routine that took almost two hours. A clinician that chastises a patient for missing a day is a clinician who is not working on their empathy.
This young woman told us about a morning and evening medicine/vitals routine that took almost two hours. A clinician that chastises a patient for missing a day is a clinician who is not working on their empathy.
4. The experience of being chronically ill or disabled can be funny sometimes. That's ok.
In a sea of zoom faces, I was the only one in my class to laugh at her jokes. Life is not always easy. When doctors/trainees don't laugh at your jokes, it makes it even harder. Lighten up!
In a sea of zoom faces, I was the only one in my class to laugh at her jokes. Life is not always easy. When doctors/trainees don't laugh at your jokes, it makes it even harder. Lighten up!
5. What works for some people/communities doesn't necessarily work for others.
Support groups are often helpful but can depend on race/SES-concordance.
Since CF patients have to *always* physically distance, this can be painful for some.
Support groups are often helpful but can depend on race/SES-concordance.
Since CF patients have to *always* physically distance, this can be painful for some.
Today was a very good day. I am incredibly grateful for what she taught us. #DisabilityTwitter
/ PHI de-identified /
/ PHI de-identified /
Ok also.
Predictably, I left out the most important part because in my mind it doesn't need to be said.
But it does.
Predictably, I left out the most important part because in my mind it doesn't need to be said.
But it does.
There's a large sentiment in medicine about knowing your own body. Patients know their body best. Listen to what your body is telling you.
I agree with this, of course. But I'd like us to pause for a minute and think about where it comes from and what it means.
People know their body because they spend time thinking about their body. Disabled/chronically ill folx know our bodies 18.7 million times more than you.
People know their body because they spend time thinking about their body. Disabled/chronically ill folx know our bodies 18.7 million times more than you.
Paraphrasing from this morning:
"Why would anyone ever think that your 10 minutes on a chart and 15 minutes in an exam room equal my four hours a day for the last 24 years? It shouldn't. It doesn't have to. So don't act like it."
"Why would anyone ever think that your 10 minutes on a chart and 15 minutes in an exam room equal my four hours a day for the last 24 years? It shouldn't. It doesn't have to. So don't act like it."
