We Need to Talk About the Expectation for People to Justify Their Invisible Illness

As I was preparing to write this blog, I had to search through my mind to find the biggest piece of having an invisible illness that we don’t talk about. It seems as if there are so many parts to having an invisible illness. However, in reality, the biggest piece we don’t talk about often enough is other people’s expectations of us to justify our illnesses. I can literally think of countless examples of this for many people who have invisible illnesses. I’m not sure why the general public (or anyone for that matter) thinks they deserve an explanation on the accommodations we need to make our bodies work; however they certainly demonstrate an entitlement to that information.

Society’s demand for an explanation has increased many of our tendencies to instantly offer up apologies for things like taking up space, needing any type of accommodations or even existing. We may become so damaged by other people’s behavior and treatment of us, that we end up feeling more and more like a burden. Even on random strangers!

Recently I was at a training conference that I’ve been attending for over six years. Historically on both Friday and Saturday, they serve a buffet and offer you the option of ordering off the menu. This year, unbeknownst to me, things had drastically changed. This year, they had decided to only offer the buffet. I really work to not come off as demanding or intrusive, so I simply viewed the buffet to see what they were offering this year. Sadly, they were only offering food heavily cooked with and in nightshades. I have a rather odd allergy to nightshades. Sometimes, it just produces hives and welts. Other times it produces anaphylactic throat swelling.

As I asked for a menu, you could see the waiter was angry that I didn’t intuitively know that the buffet was the only option. I attempted to explain that I couldn’t eat the food at the buffet; however, he just couldn’t hear me. As my husband went to the organizer, who spoke with the kitchen manager, I could see the resentment on this particular waiter’s face. He was actually heard to ask, “Are we really making an exception for her?”

That may seem like a benign example, but it’s just one of many. I recently had a client who came to my office and explained to me that he and I both knew I didn’t really need to park in disabled parking. I was so blindsided by this accusation that I just didn’t even know how to respond! I mean, really, what is the correct response when someone implies that you are not as sick or in as much pain as you truly experience?

I remember vividly my husband sharing a Facebook post of someone who had an invisible health condition, who clearly upset some able-bodied human being by parking in a disabled parking spot. She was verbally and emotionally accosted by someone who did not approve of her parking in a disabled parking spot. He verbally berated her and ended with telling her that he hoped she died in a car accident.

I will never understand the absolute hate or rage healthy and able-bodied people have towards those of us who live with an invisible illness. I often wonder if this is just their way of protecting themselves from recognizing that they too could easily find themselves in our shoes.

I have an allergy to mold, and at times (much like the nightshade allergy) it can become pretty severe. At the conference I was at recently, a well-known hypnosis presenter asked me if I was contagious or something and why I was wearing a mask. I simply explained that I oftentimes have an anaphylactic allergic reaction to mold. The next day as I was eating lunch he loudly began mocking me. He talked about how the air quality must have “magically changed” because I was no longer wearing my mask.

I am not sure why those of us living with invisible illnesses believe we owe an explanation to those healthy and able-bodied peers of ours, but I’d love to see us stop apologizing, stop explaining and stop justifying our existence. We teach people how to treat us, and can you imagine how amazing it would be to no longer have to justify or explain your body? I’d love to advocate for us all to stop apologizing for being unwell. Not just to other people but to ourselves as well! We all have every right to be here and every right to get healthy!