When I’m Too Tired to Explain

Sometimes I get to a doctor’s appointment and cannot remember what I came to say.

At home, there were things I wanted to discuss. An exercise that bothered my shoulder. Something that helped. A difficulty I meant to ask about.

Then someone asks how I’ve been, and I cannot gather the examples. I know there is more to tell.

I’ve lived with ME/CFS for more than thirty years. For much of that time, explaining myself was exhausting—and being believed was far from certain. I was told the illness didn’t exist. I was told it was depression. Meanwhile, my capacity for activity kept shrinking.

I rested more, tried harder, and struggled to understand a life that was becoming unfamiliar.

When I eventually read Toni Bernhard’s How to Be Sick, something shifted. Here was someone describing an experience so much like mine that, for the first time, I felt understood.

Someone else knew this life from the inside.

Later, Christine Miserandino’s essay The Spoon Theory gave me a way to picture my limited energy and explain why ordinary activities required choices other people rarely had to consider.

These writings helped me understand what was happening. Holding on to that understanding was another challenge.

I would discover something useful, then forget it when I needed it. I kept notes, notebooks, and diaries. Sometimes I remembered where I had written something. Sometimes I didn’t.

More recently, conversations with ChatGPT have changed how I manage that difficulty.

I can leave a few words about my day. Describe how an exercise went. Mention what hurt afterward, or what seemed easier. I don’t have to turn every observation into an organized account while I’m tired.

Before an appointment, I can ask for a summary of the notes available in our conversation. I read it, correct anything inaccurate, and make sure it says what I actually experienced.

Then I have something to bring.

This has been especially valuable in physical therapy. Instead of trying to reconstruct everything on the spot, I can hand my therapist a progress report. My physician can read a summary, or listen while it plays aloud. We have something concrete to discuss.

The report carries what I might forget.

I think of this as a form of assistance for my cognition. My observations and judgment are still mine. I have support for keeping them within reach.

And that support has opened space for more than appointments. Thoughts that once slipped away can become writing, music, or a conversation worth continuing. I can pause and return when I have the energy.

I still have the illness. But I have more access to myself.

When I think back to those moments in the doctor’s office, I wonder how much went unsaid simply because I couldn’t find the words in time.

Now, more of my experience can arrive with me.

Even when I’m too tired to explain.

— Clearblueskymind 🌿

I share reflections on living with ME/CFS at r/MECFSsupport. You’re welcome to join us, whether to share or simply read quietly.