I went to my PCP (that’s Primary Care Provider for those who don’t know) last week for my monthly visit, and a new nurse takes me back to the room. It went something like this…
Her: “You’re here for a follow-up for…?”
Me: Chronic fatigue Syndrome.
Her: Oh, fatigue. So you’re tired a lot.
(As she starts looking for the computer’s questionnaire for “fatigue” patients…)
Me: No. Chronic. Fatigue. Syndrome. It’s an illness, and it’s in there.
She continues sorting through, finally finds it, where I helpfully point out it’s listed as just “Chronic Fatigue,” but reassure her it has the right questions. The screen is huge, and I’ve done this so very many times…
She begins reading through the questionnaire the computer provides:
Her: And when did this start?
(by now I know she’s NOT in the right place, she’s doing a new patient questionnaire, not a follow-up…)(sigh)
Her: And what brought this on: stress, viral infection, accident, yada yada yada…
Me: (hard stare)
Me: (thinking: do I really want or need to get into this with this ignorant nurse who couldn’t care less? I have a blazing migraine and ear infection and just want to see my most excellent doctor. I am not in the mood to patiently educate yet another nurse today.)
Me: Possibly a lot of things, but even scientists don’t know for sure what causes it.
Her: (she looks up briefly, startled)
Her: Oh… Is it relapsing, constant, or getting worse?
Me: Constantly getting worse.
Her: Are your symptoms worse after physical activity?
Me: Oh, are they ever.
Her: And do you have: unrefreshing sleep… impaired cognitive ability… decrease in activity level that interferes with normal activities… migraines or other headaches… muscle pain… weakness… gastrointestinal pain or bloating… etc etc etc
She glances over and sees me nodding my head, yes, to everything.
Her voice has gotten softer and lower as she’s moved down the list, and she trails off before she gets to the end. She wound up not asking me all the questions, and I should know, having done this once a month for years.
Me: I can make it easy for you. I have every single one of the dozens of symptoms on the list, with exception of diarrhea.
She looks at me with surprise.
Me: Next section: Yes, medications help, to some extent, but not enough.
Me: Yes, they cause lots of side effects, such as nausea, heartburn, headaches, etc. I take meds to deal with the side effects of my meds, but no, it’s not nearly enough. I’ve been housebound since 2007.
Me: Next section: yes, I’ve tried supplements and they do help, as does meditation, massage, and physical therapy. Acupuncture was questionable.
She is busy clicking boxes.
I really couldn’t tell, when she left, if she was upset at the thought of an illness that she’d never heard of causing such issues for such a long time, if she was overwhelmed, or just didn’t care. She didn’t look up when she stammered, “I hope you get to feeling better soon.” But as I reflect back on it, her shoulders were hunched, and she kinda looked like a dog who has been beaten… or maybe like someone about to cry. I honestly don’t know. I wasn’t mean or snippy, I was just matter-of-fact.
This is what it is.
I rested my blazing head down on the edge of the table, closed my eyes against the too-bright lights, and practiced my deep breathing while I waited for my doctor to come in. I couldn’t wait to get back home, away from the lights, the ordinary sounds of life, that brought such searing pain to my oversensitive brain, back into my girl cave and the dark and quiet… one breath, one moment, at a time… but how I longed to set foot in a store, or just ride in the car without sunglasses and a scarf over my eyes…
But, This is what it is.