A view from the land of chronic illness

More and more, these days, I find myself feeling like a stranger in a strange land. As my illness progresses, all you healthy folks seem like a different species. What do I need you to know about me and the strange world I inhabit?

You can’t tell by looking… How much pain I am in and how difficult things are for me are not obvious to you. It’s unlikely, I am going to tell you, either, because I don’t like complaining and there’s not much anyone can do about it. When I say “no” or “not now,” or “not anymore,” please take my word for it.

I don’t have all the answers. You ask how much activity will be too much. You ask if there’s anything you can do to help. I appreciate your asking and if I know an answer, I will tell you. Often, I don’t have answers. Often, I just need you to join me in the mystery.

Let me find my own answers. I know your eagerness to problem-solve the challenges I face is a sign that you love me. Asking if you can do something for me is lovely. Fixing something for me without asking is irritating. Sometimes your solutions aren’t mine and, in fact, may make things more difficult. There is a wonderful phrase from the disability community: “nothing about us without us.” You may be on my team, but it’s still my team.

I do have feelings, but you didn’t cause them. Sometimes, having this illness, I get sad or angry or have some other Big Emotion. Sometimes, when I’m tired, they may come out at you. I apologize. My emotions are not your fault. They are not my fault. Emotions are a side effect of being human. Let’s just breathe through them and watch them change.

I love you. I have a secret shorthand: I say to myself, “triple TC.” It stands for Too Tired to Care. I love you and I want to be excited about the things that excite you, but sometimes keeping on keeping on is using so much energy that I can’t add enthusiasm on top of it. Please forgive me.

I love you. Thank you for being here with me, holding my hand, traveling beside me. I know it isn’t easy. Still, there is a special bond we share because we are on this journey together. I love you.

Please feel free to send me email and ask for support.

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