My mother had red itchy spots on her back that made her miserable. How could she be this much of a wimp over stupid mosquito bites? Flash forward a few days, and the diagnosis of shingles had completely changed her attitude. She was happy to have shingles. But why? Because she had now allowed herself the right to be in pain. To take breaks, rests, but most importantly she thought about her condition in a whole new light. She probably even changed her self-talk.
It’s funny (or sad really) how we put so much of our own power and self worth into labels. The pain didn’t change, but the label did. She was experiencing more pain than she deemed appropriate for mosquito bites, and that made her miserable. She experienced less pain than she deemed appropriate for shingles, and that made her happy(?).
But it is more than that, surely. Because society as a whole puts a lot of faith in labels. We give very little sympathy for mosquito bites- just suck it up, but are very sympathetic towards shingles. My mom’s pain was the same despite the label- but sympathy from others is not based on the pain but the label.
It made me think about my own journey- how when first faced with an ME/CFS diagnosis I dismissed the idea entirely. My pain was not from some “made up syndrome”, my pain must have been from something “really serious”. It wasn’t until my concept of ME/CFS changed, that I came to accept the diagnosis. And in a strange turn- my new doctor was less willing to grant me that diagnosis and I ended up having to fight for it. What was now so important about the label? I knew I had CFS, but why is it so important for an official diagnosis? Because of two things- we care what other people think, and society puts so much faith in western medicine- what someone tells us they are experiencing needs to be verified by a professional to be believed.
These days the CFS diagnosis is a rare type of diagnosis- in that is based on what the patient tells the doctor, not a test result. It can be very difficult for a doctor to feel comfortable making a diagnosis not based on something as black and white as a test. As medicine progressed over the last 100 years, our dependence on tests has led to a lessening in doctor’s abilities to diagnose on symptoms alone. We have lost faith in self-described symptoms- not just in the doctor’s office, outside of it to. It seems we have lost the ability to even believe our own symptoms as either real or worthy of even self sympathy. Perhaps if we gave ourselves more credit, we could reverse the trend, giving more sympathy towards others too. Maybe the world would be a more compassionate place. Couldn’t hurt to try.