The Symptoms AREN’T the Disease – a Fable

“Why aren’t you better?”


“I’ve given you all the right medication to fight these symptoms. Why aren’t you better?”

Hearing that, I felt discouraged. It had been nearly three years of this. Asthma, no sense of taste, no sense of smell, poor hearing. I went through a large box of tissues almost daily. In my car was a large shopping bag full of used tissues just from the time I spent on the road driving to the schools where I taught each day.

I couldn’t hear my students when they asked me questions. I was constantly exhausted because I seldom got more than an hour or two of sleep. I hadn’t tasted anything in a long time. I was feeling more and more alienated from others, sort of locked in a cocoon of sensory deprivation. I was grateful I could still see. It’s true she’d given me every known asthma medication. I’d sucked tons of steroid powders into my lungs to no avail, but it still amazes me that my doctor yelled at me for not getting better. I think she should have said, “You need to see a specialist.”

Which I did. On my own hook.

This wasn’t the first time. When my hip went south, my doctor didn’t order X-rays of my hip because I was only 53, “too young” to have what I actually DID have and what my symptoms pointed to (classically). It was two years of my “not getting better” (and that doctor yelled at me, too) before he ordered the right X-rays.

These doctors didn’t see that I had any problem at all. For both of them I was a complaining older woman, probably looking for attention. With the meds I’d been given, my asthma should have been under control. What was wrong with me? Based on the X-rays, there was nothing wrong with me, why did I keep coming back? I was probably just after painkillers, right? I am sure they both had a lot of patients like that (there were some among my friends), but I wasn’t one.

It seems there is often a disconnect between what something actually IS and what we believe it to be based on external (sometimes extraneous) factors, what we expect, or what is common. I have a rare condition called “Aspirin Exacerbated Respiratory Disease” that affects 1 in 10,000 people. It took two specialists — an ear, nose and throat guy and an allergist — to identify the problem, and I’m very close to fine as long as I take two medications. And, once the right X-rays were taken, it was clear that, though only in my early 50s, I had advanced osteoarthritis in my hip. That was reality.

What the specialists did was question. Both of them had the courage to say, “I don’t know what this is, but it could be… We have some tests we can run.” They didn’t offer me anything until they had some answers, and I think, if they’d come up with NO answer they would have said so. “I don’t know.” When the problem was finally diagnosed (by the allergist) the ENT doctor said, “That’s a new one for me. I’m glad she figured it out for us.” US.

It’s amazing how uncomfortable people are saying, “I don’t know,” and yet, if it’s the truth, it’s the point where discoveries begin. It’s a very elegant sentence, really, nothing to be ashamed of because…

“There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy.”

2 thoughts on “The Symptoms AREN’T the Disease – a Fable

  1. Definitely need better doctors! Any normal doctor would have sent you to a specialist after your second visit. That’s pretty normal most places. Two visits, no fix? Specialist!

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