Lose the Smile

The title is from a YouTube clip of some medical TV show. There's an African American patient and Dr. Bailey -- also African American -- and her African American boss. Dr. Bailey cancels scheduled explatory surgery and the White surgeon has a fit and Dr. Bailey lectures her.

And the patient has been through hell with no answers. Dr. Bailey really has a cow about that.

In the clip, race is never mentioned but I feel like the unstated subtext is that she's had so much unnecessary surgery without answers in part because she is African American.

The appropriate diagnosis is apparently porphyria and I don't know anything about it and wondered what it was and wondered about it's ethnic distribution. I wondered if it's a condition more common in African Americans and perhaps an African American physician would be more familiar with it.

So I looked it up and... I absolutely hate how terrible a lot of medical stuff is with regards to trying to explain stuff in laymen's terms. I worked in health insurance for five years. I had training in medical terminology for that job. I feel like I don't really understand what I'm reading.

BUT, at the risk of sounding stupid, it's apparently a genetic disorder in most cases and probably trends Caucasian. Which means one possibility is that many physicians would not think to check for porphyria in an African American.

But another possibility is that it's under diagnosed in non-white populations.

Years ago, on some list for Cystic Fibrosis patients, someone got to talking about a child in the family who died at age five mysteriously and how heartbroken the mom was or something like that. I think perhaps after meeting me, she made some peace with it.

I have a relatively recently discovered, relatively mild variation on Cystic Fibrosis. Simply describing my own diagnosis as a "relatively mild for of CF" was enough to inspire everyone to want my head on a pike. CF is extremely deadly and the medical establishment doesn't really want to try to treat you. They want you stop annoying them with your histrionics about how you are DYING a slow gruesome death and no one cares.

Anyway, since she had CF and it's genetic, she knew it ran in the family. And because I had a newly discovered, relatively mild form, I think she concluded maybe the kid had a form of CF and wasn't diagnosed.

I know how much BS I endured before getting a useful diagnosis, something I call "a better label than crazy." And I have read articles that suggest this is pretty much the norm for people with obscure conditions.

When I was seventeen, my dad had a huge blood clot in his leg and the guy who diagnosed it went straight to amputation as the correct answer. My dad asked for a second opinion and was told they could give him blood thinners and try hot and cold treatments to try to break up the clot.

I administered the hot and cold treatments. Dad kept his leg. He once bitterly said the first physician "just wanted to practice his technique on me."

And I wonder how much worse that element is if you are a person of color in the US.

Life expectancy for African Americans is lower than for most other ethnic groups in the US. And I wonder why that is.

If you don't expect people to live, it's easy to sweep a lot under the rug. How much of the lowered life expectancy is due to medical professionals not really caring, not really trying as hard, etc?