The Hardest Part of Being Ill Is Looking Fine

My condition is not visible. There is no cast, no obvious sign, nothing that tells the people around me that some mornings I wake up and the act of getting dressed costs me more than they would believe.

I have had it for six years. I have learned to manage it, mostly. I have learned what the warning signs of a bad week feel like and how to adjust. I have learned what to say to my employer and what not to say. I have learned which friendships can hold the reality of it and which ones quietly could not.

What I have not learned to fully manage is the particular loneliness of being ill in a way people cannot see. The way you have to keep explaining yourself in contexts where you should not have to explain.

The way you start to wonder if you are overstating it, even to yourself, because the evidence is so interior.

There was a year where I did not tell anyone new what was happening because I was exhausted by the variable of how they might respond. Some people are wonderful. They adjust, they ask the right questions, they do not make a thing of it. Some people are not. They forget, they minimize, they accidentally say the things that are hardest to hear. I found I did not have the energy to keep gambling on which kind I was dealing with.

I am more open now than I was then. Partly because the exhaustion of hiding it turned out to be heavier than the exhaustion of disclosure. Partly because I found people, slowly, who handled it well. Partly because I stopped having the same relationship with what other people thought as I used to.

Living with something invisible teaches you a specific kind of self-knowledge. You have to be your own evidence. You have to trust your own read of your own body in the face of a world that cannot always see what you are dealing with. That is harder than it sounds. But it also builds something.

I am not grateful for the illness. I want to be clear about that. I am not going to tell you it made me who

I am in some clean narrative way. But I am here and I am still going and I have figured out how to build a life that accounts for it. That is not inspiration. It is just what happened when I kept showing up.