Posted in medical

Big fat hairy deal: Why I wasn’t diagnosed with a deadly disease until it became truly life-threatening.

I recently read “Doctors Told Her She Was Just Fat.  She Actually Had Cancer” from Cosmopolitan.

I didn’t know the full story behind this until I talked to my doctor recently, but I do have a similar story to tell.

I have severe adrenal insufficiency.  By severe, I mean that by the time they actually checked my cortisol levels, they couldn’t find enough to measure.  Nor any ACTH to measure either.

There had to be some cortisol or I would’ve died.  But I was already waking up nightly too weak to hold my head up, move my hand, or breathe on my own (I had a bipap with central apnea settings that saved me by going into vent mode, but the alarm would go off endlessly because even awake I couldn’t get a breath).   So it was a close call by the time they found it, and I’d been aware I was headed towards dying for awhile by then.

It turns out I was tested four years earlier.

It turns out that my cortisol levels were low — not as low, but low enough they’d normally be of concern — during the test.

It turns out the woman who did the test did not bother to tell anyone this or do further testing to confirm something was wrong.  Even though my health was already going to shit in a major way at the time.

Why?  Because I’m fat and hairy.  Basically.

She didn’t test my cortisol just randomly.

She didn’t test my cortisol because she was concerned about adrenal insufficiency.

She tested my cortisol because she looked at my body type and assumed I might have Cushing’s syndrome.  Which is the opposite of adrenal insufficiency:  Too much cortisol.

I have had more hair on my body than the average female for a very long time.

I have fat in my abdomen and in other areas people see as Cushing’s-esque.

I have fragile skin and stretch marks because I’m hypermobile (I’ve had them since I was a skinny kid).  Nothing to do with Cushing’s.  Lots of people in my family are hypermobile.

Also practically everyone in my family is hairy and has this fat distribution pattern.

None of us have Cushing’s.

I can’t fault her for checking me for Cushing’s.  Generally every new gynecologist I see freaks out about my hormones until they figure out there’s not much abnormal about them.

But.

When the test came back low on cortisol.

She didn’t tell someone.

She didn’t retest.

She didn’t order further testing such as an ACTH stimulation test.

She didn’t forward this information to other doctors.

She just thought to herself, “Well it’s not high so it’s not Cushing’s so no problem.”

Four years before I was diagnosed.

Four years before I was absolutely sure I was gonna die before they figured out what was wrong.

FOUR YEARS because I was fat and hairy and looked like every other person in my family who doesn’t have Cushing’s.

Of course given the amount of steroids I’m on now, this poses a new question — how would we tell if I developed Cushing’s from my steroids?  But I assume it’s gonna be because of something other than the fact that I look like I’ve always looked.

(And apparently while I was in the hospital, an on-call doctor asked my doctors what on earth they’d done to me with the steroids.  My doctors had to say I’d always looked like this.)

Just take a look at these photos for a moment:

ronmelbody.jpg
My dad and me standing facing forward.  Same body type.
dadmelsideways.jpg
My dad and me standing facing sideways. Same body type.
dadmelface.png
My dad’s and my faces.  Same basic face, same basic areas of hairiness (unibrow, upper lip, chin), he’s just hairier.  (Also his face is thinner than usual there because he has cancer in that picture.)

My body type is basically exactly a shorter version of my father’s.  We’re just fat hairy people who carry a lot of weight around our bellies, among other places.  So are lots of people in my family.  Nobody in my family has Cushing’s.  As I said, it’s fine to check, prudent to check.  But when the test shows the opposite, shouldn’t someone be concerned before it becomes a life-threatening medical issue?

This isn’t the only time being fat has delayed a diagnosis, either.  It delayed my gastroparesis diagnosis, because they wouldn’t believe I hadn’t eaten until I was visibly not eating in the hospital and losing even more weight.  I lost a total of 75 pounds before they treated the combination of gastroparesis and adrenal insufficiency that was causing the weight loss — and I was still fat after I’d lost the 75 pounds.  I just weighed 170 pounds instead of 245.  Still fat.  Still a dangerous amount of weight to lose in a hurry.

But it looks like I’m gonna have to deal with “Are you sure this isn’t Cushing’s?” thing the rest of my life probably because I’m not gonna stop looking like this anytime soon, I’m not gonna stop taking steroids anytime soon, and because Cushing’s can be a real possibility when you’re on steroids for adrenal insufficiency.

But the amount that doctors can discriminate based on appearance — and it goes way beyond weight, especially if you add in sexism — is alarming as hell.  As well as the fact that with my old gynecologist, the bias was unconscious as far as I can tell, so it’s not like she was able to say “Hey wait a minute…”

Or in old doctorese medical chart slang, I’m FLK-JLD:  Funny-Looking Kid, Just Like Dad.

 

Author:

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

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