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Monday, October 23, 2017

"What happens when you know something is terribly wrong but nobody believes you?"

It’s time for women to be taken seriously when it comes to our health, our bodies and our ability to speak out.

 - Salon (10/23/2017)

A couple weeks ago, Samuel and I went to the local clinic to establish a PCP so we could get refills on our meds (our VT medicos were kind enough to give us plenty to stretch until we'd settled in).  Records had not been transferred yet, so it was pretty much a cold call.  After getting our vitals and our basic exams, I told the doctor what we each were taking, and also asked if I could get something to help me sleep. 

Boom, boom, boom, he sent orders electronically to the local pharmacy without my having to bring up info on our old clinic's portal showing we had, in fact, been prescribed anything previously.  Even my new Rx wasn't an issue.

Compare and contrast:

As Jennifer sought treatment for her symptoms, “they would run a wide range of tests and do investigations. And then when they couldn't find anything, it always turned back to, ‘Well, maybe you're just really stressed. Maybe you are depressed. Maybe there's nothing wrong at all. Maybe this is all in your head.’”

It took Jennifer over a year of seeing doctors and getting second, third and fourth opinions to even land on her diagnosis. Was this reluctance to diagnose Jennifer due to the lack of knowledge about this fairly prevalent disease? Or was there another unstated prejudice standing in the way of Jennifer getting treatment?

“I started to suspect as I was trying to get a diagnosis that I was being taken less seriously because I was young and female there was a strong expectation that because of my youth I was supposed to be well and nothing could be wrong,” Jennifer told me in our interview for "Inflection Point." “But that also because of my youth and my gender that I was just more prone to be kind of anxious and worry about my body and what I was feeling. . . . And I think there's just this sort of unspoken expectation that women are more fragile and more achy, more whatever.”

This has been precisely Ericka's experience with the United States' medical community (please see the previous Factoid of the Day). 

Glibly diagnosed with menopause at 42 by her PCP. when her ovaries completely failed all of a sudden.  Told by ER doctors that she was making herself hyperventilate to explain why she was tachycardic, hypertensive, and doubled over on the floor in pain and nausea.  Scolded for not getting enough exercise when my active, vivacious wife was brought down by absolute fatigue.

At various times during this saga, Ericka questioned herself, and would ask me if I thought she was crazy.  No, the strongest person I know, who always played through the pain, who made amazing shit happen, who could extemperaneously convince funding agencies to give her millions of dollars for affordable housing whilst dressed in gardening clothes, would not all of a sudden...just stop.

She stopped being able to have light in her life.  She stopped being able to listen to music.  She stopped being able to read, be active, do any of the things she loved.

We went to the same clinic last week to jump through bureaucratic hurdles and get an extension of meds an astute ER doc had prescribed her a few days prior to mitigate debilitating pain--neurology couldn't get her in for a couple more days, and it would be the height of cruelty to make Ericka suffer for any length of time.  Yet a 30-minute appointment turned into a torturous, 2-hour ordeal of cajoling, presenting old records, proving the need for relief, even taking a drug test, before the physician deigned to do no harm, and prescribed a mere 2 days' refill to help my wife.

Ericka has a systemic disease.  We know because she has terrible symptoms, and we have a lot of lab data to explain why.  But nobody listens to her because our health "care" system, and society at large, has a systemic disease that quite literally hurts and kills women.

Despite that fact, despite the crippling agony, despite the anguish caused by lacking a diagnosis, despite all the obstacles--from insidious microaggressions to traumatic misogyny--my wife is still here.  She is relentless, and she is smart, and she has put all the clues together and gotten all the pieces in place.

Ericka is going to make the medical establishment listen to her.  Every doctor she meets--not to mention American society--will be all the better for it.


October 23, 2017 in Family Life, First Do No Harm, Soaking In Patriarchy | Permalink


Well I ain't gonna say 'thoughts and prayers' as neither is my forte.

But I've been wondering long time. Thanks for the update.

Patient advocacy is the thing. Sometimes 2 or 3 voices yelling gets heard faster. Have you inquired about OHSU?

Knowing you guys, I'm guessing you've thought of every resource. I'm sorry she's being put through so much shit by the condition and by the irresponsible practitioners.

Better outcomes soon, Ericka.

Posted by: Kevin Hayden | Oct 24, 2017 6:33:43 AM

I just wish I could give you some 24th century medicine. Alas, the early 24th century still has some misogyny. I mean they wouldn't let women be captains for years! Humans. So bizarre.

Posted by: spocko | Oct 24, 2017 11:32:24 AM

Wow. Just catching up on this. This happened to my daughter 15 years ago. She suffered for over three years. Doctors wouldn't take her seriously. She was accused of everything from faking to mental disorders. Finally she was reading a case study for classes and realized she had pancreatitis. Doctors still wouldn't believe. Doesn't normally manifest in someone so young. She had to fight for a couple more moths after that to get tested. And of course, that's exactly what she had. Medical profession has become just one more profit driven business. They only want to deal with easy diagnosis. Sending E hugs and support from afar.

Posted by: Libby | Oct 25, 2017 3:50:49 PM

I am so sorry to learn of your troubles. It took nearly two decades for me to receive a diagnosis that didn't fit doctors' expectations, and they never took my reports of pain seriously--until I began passing out from pain (which I define as 11 on a scale of 10). So very frustrating, and I dearly hope for better fortune for you. On the plus side, I did eventually find a doctor who cured me with surgical intervention. I just hope you can similarly, but more quickly, find similar relief. And yes, it is very much the reality of females, in all realms, to be discounted. At least a lot of us are no longer outright enslaved to one degree or another, the condition of far too many even today.

Posted by: Kathleen | Oct 28, 2017 2:23:19 AM

I’m following with interest, as I have lived systematic and chronic pain for 15 years. For five years my blood work came back ANA positive for lupus, but all other testing besides my SED rate were in normal range. To be fair I have been ANA negatively for almost 7 years now. But I’ve also developed psoriasis, so it could be that. In the end they’d rather through meds at me than figure out the cause of the pain. Keep up the good fight.

Posted by: Tracy Jo | Oct 30, 2017 10:55:10 PM

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