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When a Doctor Turned Down My Referral and Said I'm 'Not Sick Enough'

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My body is nearly always in constant pain. On my good days, I only feel it protest just a little and can almost forget that I have pain at all. On my bad days though… Well, it could mean every time I stand and need to walk there’s pain generating through what feels like every muscle. This has been my reality for a few years now, but this past year, it’s been much worse. There were activities I had to limit or stop doing altogether.

I suddenly became self-conscious of how often I heard myself complain about the pain my body felt. I knew just by the change in frequency of not only being aware of it, but talking about it, that I needed some relief. I would try everything from ice to heat to massages to help, and sometimes those things would provide some relief. It was never lasting relief, though. The pain was still present and only disappeared on the rare day here and there. Even now, I’m aware of the pain.

I promised myself 2020 would be the year I would put me first. That included tackling the mountain that was my health. I had put it off for far too long due to things like inadequate health insurance, being too busy, taking care of others, and honestly because of fear. Chronic illness runs in my family — I was afraid of what the doctor would say. But despite those things, including delays due to COVID-19, I took the leap and started climbing that mountain.

Cue the start of doctor appointment after appointment, test after test, and no real answers. My primary care promised that she and I will work as a team to find out what exactly is causing me to be in pain, that I won’t be alone in this. She wrote a referral to send me to a rheumatologist — one of a few other specialists — pending a suspected fibromyalgia diagnosis. That was months ago.

I was not adequately prepared for the frustration and stress trying to get a referral to be approved. Four rheumatology specialists have declined to take my case thus far: three due to not accepting my insurance (even though my insurance company listed them in-network) and the other stating that I “wasn’t sick enough.”

I was sitting at home one evening recently, trying to come back from a beyond stressful day that had left me reeling, when my doctor’s office called. I truly didn’t need this call just then, even if the lady on the other end was beyond sweet and understanding. The office had called to tell me their most recent attempt at getting a rheumatologist set up to help diagnose the reason behind my pain was unsuccessful. Again.

This time, however, wasn’t because they didn’t take my insurance; it was because the rheumatologist who looked at my case said he wouldn’t work with me. “The doctor there said… he’s saying you’re not sick enough and won’t take your case. I’m sorry, I know how frustrating that has to be to hear,” the nurse told me.

“Frustrating” was definitely one of the many emotions I felt in that moment. I instantly wanted to scream, not at her, but at this doctor. I have been living with this pain for years; he only glanced at a file with my name on it. Getting help to combat feeling sick took time and effort on my part; it seemed he just carelessly threw me aside. Although it stated I was struggling with widespread pain, it didn’t say that sometimes it gets so bad that I cry. Cry out of pain, out of frustration, out of feeling stuck in this body that I try not to resent on the worst pain days.

Fibromyalgia (what my primary care suspects I may have) is an invisible illness. If appearing sick is what I’d need for a diagnosis, then I’d never look sick enough to most people. Complicating this more is the fact I grew up in an environment that demanded I’d never complain, even about things like feeling unwell. I’ve learned how to put on a brave face most of my life. Still, a brave face doesn’t mean pain isn’t present, no matter how good a person is at hiding that pain.

The nurse promised to keep looking for another doctor before she went home that evening, and for that, I was grateful and honestly touched. She stayed late that evening to tackle this mountain with me.

I’m still climbing the mountain that is my health. I’ve had “baby steps,” as my primary care doctor likes to call it, in the right direction, and we’re not giving up this fight for answers. Being in between a diagnosis while also being in pain is no fun. It’s stressful, overwhelming and defeating on some days, but it’s also proof of how strong we are for searching for answers and solutions and the determination that comes with that.

That’s another thing the doctor wouldn’t have seen on that referral — my determination to find some answers and get my diagnosis.

Getty image by Shironosov.

Originally published: November 15, 2020
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