Sometimes I wonder if doctors have a list of “illnesses” that they diagnose difficult people with just to pacify them; just to quiet those people that insist they don’t feel well even though their tests come back fine. Sometimes I wonder if there are illnesses that all doctors recognize as “fake,” but are given like sugar pills to patients deemed dull-minded attention seekers with wild imaginations.
It’s ridiculous to think this, I know. But after six years of being disbelieved about the symptoms you’ve lived with every day, it’s impossible for it not to affect the way you think about everything. It develops a mindset that is difficult to shake.
Many patients wait years for a diagnosis, bouncing from doctor to doctor, test to test, hoping and praying for answers. Illnesses like Dysautonomia are often misdiagnosed as a mental illness because, despite the patient’s complaints, nearly all of their tests come back within healthy ranges.
One of the greatest difficulties of chronic illness is the limbo between your symptoms presenting and receiving a full diagnosis. To suffer through this time without any answers is difficult enough, but to add to that the pain of doubt is like rubbing salt on an open wound.
This was my life for many years and these are the effects it has had:
1. I Assume The Worst
Several weeks ago I desperately needed to go grocery shopping, but my energy levels were low and my Dysautonomia was flaring. Any amount of standing left me breathless and dizzy and I knew that if I wasn’t careful I’d end up passing out. So I drove to Meijer, walked in the doors, and tried to be confident as I asked the greeter for a mobility cart. She looked me up and down with her eyebrow raised and then asked, “Something wrong, honey?” I smiled tiredly and explained, “I have orthostatic intolerance… if I stand up too long, I could pass out.” Quickly she pulled out the cart and sent me on my way.
As I moved at a snail pace throughout the aisles, I got many a look. And while most were likely just being conscientious of me to give me enough space, I wanted to crawl in a hole. I felt judged. I felt as though the people who saw me were thinking I was a silly, able-bodied young woman using a cart that should have gone to someone who really needed it. And maybe a few people thought that, but surely not everyone who looked at me.
The truth is, I’m prone to assume that you don’t believe me.
2. I Rarely Get Defensive
You might think getting defensive is a natural response to being disbelieved but, in this case, it’s rarely the result. In reality, when people doubt me I take it quietly. Probably in part because I expect it, as I said above. But also because a lot of times I doubt myself.
After being told my illness was all in my head, I didn’t blow up into a defensive rage. I quietly asked myself if this could be true. If perhaps, just maybe, I had done all of this to myself. I searched my mind to figure out what would prompt me to feel all of these symptoms that apparently weren’t real. There was no yelling. There were only quiet tears of defeat and doubt.
I’m learning to defend myself now, to recognize that what people say about me doesn’t have to be true. I’m grateful to the people who have advocated for and defended me because they have helped me find the strength to defend myself.
3. I Minimize My Own Illness
The first time I fully passed out my reaction was, “Holy crap… I’m sick.” Despite 5 years of constant illness prior to that, despite multiple episodes of nearly losing consciousness, fully passing out was something that shocked me. Why? Because I minimize my own illness. I let the way that other people think about my illness or the way I perceive them to think about my illness affect how much I actually believe my own body.
The same thing happened when, after six years, I finally got a full diagnosis. I looked at those words on that paper, I listened to the doctor taking me seriously, and I thought, “This is real. It really isn’t all in my head. These are real words I can use to tell people what’s wrong with me.”
Because the truth is, I tell myself to suck it up. I beat myself up for all that I cannot do because my mind tells me I should be able to do those things. And while it’s important that I don’t allow this illness to defeat me, it’s equally important that I recognize it for the force that it and have grace with myself.