Healthy People Say the Darnedest Things
“So, it has come to this,” I thought to myself as I sat in the salon chair. I had dreaded the day I would have to cut my long hair because I didn’t have the energy to properly care for it. Now that day had come. I stared at my reflection in the salon mirror across from me and watched as my long-time hairstylist gently combed through my hair with his fingers. I explained to him that as much as I wanted to keep my hair long, my last flare-up didn’t allow me the energy to shampoo and dry it anymore. Even though I had shared my struggle with Lyme disease with him on multiple occasions, my statement jarred him, causing him to pause. He looked back at me through the mirror.
Filled with compassion he said, “Oh honey, you can just come here and I will shampoo and style it for you, no problem.”
My heart sank. His comment was well-intentioned, but it was a prime example of what I would call a “healthyism” – things healthy people say out of a lack of understanding for the condition of a person struggling with chronic illness. This particular healthyism cut surprisingly deep, causing me to feel even more alone in my struggles.
How do I explain to a healthy person how much effort it takes to get to the local salon? How do I explain that I have driving restrictions because of the sensory overload that make driving overwhelming with brain fog? How do I convey that I will need to recover in bed the rest of the day after this short appointment?
Another experience I had with a healthyism, was over a year later as I was approaching remission. In that time, I had an appointment with my optometrist. Given his medical background I didn’t hesitate to list off my symptoms once prompted by his questions as he looked over my chart.
“Fatigue, nauseas, brain fog…”
He interrupted, “Tell me about the brain fog.”
“Oh gosh, it was scary, like losing my mind…dementia, kind of thing.” I went on to descried how I still park in the same spot at the few places I go, because having not been able to find my car in that time still affects me psychologically.
Before I could go on, he interrupted again, “Oh, I must I have that then.
If there is a more deplorable phrase which individuals in the chronic illness community regularly endure, I don’t know what it would be. Just when I felt his ignorance couldn’t get more offensive, he managed to outdo himself by adding, “because I can’t find my car after I get out of the gym.”
Stunned again, I couldn’t get over the word “gym.” I thought to myself, “Did he really just say that?!”
I have had days when I barely had the vigor to chew my food! And he has the energy to go to the gym? How could he possibly entertain the idea that he has the same thing?!
It is heathyism like this that make those of us in the chronically illness community respond in one of two ways. One, we try to explain in different words, the complexities of our disease. This option is usually met with either eyes that glaze over or it provokes a cringe worthy game of “have you tried ___”.
Then there is option number two, where we defensively invoke a soul crushing shut down. We say nothing more, because we clearly aren’t being heard anyway. This protective measure is helpful for surviving awkward social interactions but being misunderstood and not feeling safe enough to correct unawareness can furthers isolate us.
So where does that leave us? For me, surviving healthyisms starts with understand, which is ironic since a lack of understanding is what defines a healthyism. Let’s not compound the very problem we are inflicted with by healthy people by not first trying to understand them. The fact is that most people have not had to bear the devastation of fighting chronic illness. With something this pervasive “you don’t get it until you get it.” It isn’t fair to expect healthy people to truly understand the depth of our struggle. By keeping our expectations in check, we are less apt to take offense at misguided comments.
Secondly, we need support from those that do understand our plight. Having a compassionate team behind us helps combat the feelings of loneliness that are often provoked by healthyisms.