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I’m the Expert on My Body's Battle With Chronic Illness – Not Anyone Else


I am not an expert on many things. Having never lived alone, I can’t run a house. I’d have no clue how to buy or sell a home, or how to go about sorting out and paying for it. I have a pretty poor sense of direction. If I tell you I once spent about 15 minutes lost in a service station bathroom, you might get some idea of how poor it is. As much as I love animals, I haven’t had many pets and none since my very early teens. I enjoy pets and I’d give almost anything to have one, but I’m not an expert in them. I take an interest in politics but could never run a country. I’d bankrupt it in days by giving every department the money they needed, whether we had it or not!

However, believe me when I tell you I am an expert in my body, what causes it pain and what in the past has worked to help that pain. I am also an expert in my fatigue, what causes it, when I’m having a bad flare and when I’ve had enough. I may not be very good at pacing myself or following what I know I should be avoiding, but I do know what causes flares or issues. I also am an expert in how things affect me, how they can relieve my symptoms or flare them up. I know what I am allergic or intolerant to, but with that, I only know specific things I react slightly worse to. If I don’t take steps to help myself stay calmer (e.g. my fiddle toys), I know when I am going to have a sensory overload or panic attack. Both affect me slightly differently  — very slightly.

Recently, a number of issues have surfaced where people have ignored me and caused a problem — either pain or fatigue, anxiety or overload. I am not getting at you. I am not trying to be a huge pain. I’m not trying to make you look stupid or upset you. I am simply more of an expert in me than you are.

I plan my hospital appointments because I know more than one in a week causes an overload. I know if you go too fast down a drop curb that isn’t very low, it will either cause the wheelchair to drop suddenly and hurt me, or it will tip me out. I know that certain roads hurt me more than others, certain turnings are worse than others and I can tolerate them more on a better pain day. I know if a waiting room “looks quiet” to you, to me it isn’t — and I can hear things that maybe you can’t. So it’s going to cause me to have an issue. I can smell things that maybe you can’t, or I know a certain smell — while nice for you — is going to set my allergies off because it’s not one I can tolerate.

Believe me when I say I am more of an expert than you are in me. I’m not trying to be difficult, and I’m not trying to cause a problem. I hate being the center of attention and I hate fuss, so that is not what it’s about. It’s just very simply about me being the expert in me.

Getty Images: Daria Zaseda