Prior to my illness, I never had a regular doctor. I felt no need for one. My experiences with my small-town doctor growing up had convinced me that doctors cared. Doctors listened. Doctors would help when needed.
When I was hit with the very difficult neuroimmune illness, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), I was terrified. The symptoms knocked me into outer space; they were unlike anything I had experienced before.
The first doctor told me nothing was wrong with me. He became irritated when I contacted him a month later, still barely able to wobble down the hall, eat, think clearly, or tolerate sound or light.
I got myself to an ENT specialist, but when my inner ear testing was normal, he proclaimed (in a busy hallway!) that I had a “neurotic depression.” I told him I had been a clinical psychologist, and what I had was NOT a depression. He gave me a sage look and said, “We don’t always recognize it in ourselves.”
A trip to a neurologist was even worse. He ridiculed me and said nothing was wrong. Ironically , my chiropractor, who had a couple of other patients with the same problem, recognized it as chronic fatigue syndrome, the demeaning name it was known as exclusively then.
I bounced around to a couple of other doctors who did believe the illness was real, but rarely saw me and, when they did, took no time to listen. Nine years later, luck smiled on me, and I found an immunologist an hour away who ran a clinic for the disease. He explained how it worked and wanted to know my story and how the illness was affecting me. In fact, he told me that he had taught medical students and one of the things he drilled into them was that if what the patient is telling you is different from the tests you run, listen to the patient and dig deeper. His early death was a huge loss to me, his patients, and the students he taught.
I hope new doctors learn this skill. It’s so badly needed. I’m typing this with inflamed eyes because a young eye doctor I saw last week didn’t listen when I told him most eyedrops inflamed me. I explained that I needed a very low dose of the dilation drops. He didn’t hear a word, and now I’m paying for it.
Lake Worth, Florida