Dear Eleanor,

I was recently diagnosed with a connective tissue disease that has no known cause or treatment. I’ve been in chronic and worsening pain for several years now, and I was holding on to the hope that if I could name my disease then I could learn how to fight it. The news is still sinking in. The casual way that the doctor told me not to “expect any pain-free days” (for how long? oh, for ever) still rings in my ears.

More than anything, the not-knowing kills me. The not-knowing what I will be able to do or tolerate in this body, the not-knowing what I do to myself that is making it worse (or better!), the not-knowing if any of the pathetic little exercises or supplements or diets are doing anything at all. Western medicine had nothing more to offer me and alternative medicine is a wall of noise with no clear signal.

I know that my mind and body are inextricably entangled in my pain, and the stress and anxiety I am experiencing over the diagnosis is certainly making my pain worse. I also know that moments of joy and connectedness ease the suffering. I don’t want to become hollowed-out by this life, a shell for addiction or cruelty or catatonia, and I don’t want to end up clinging to some snake-oil crutch to feel in control. Acceptance is harder than it sounds, though. There’s not really a right answer to this one, but I’d appreciate any wisdom you have.

Dear Ouch,

I can’t sleep tonight. Partially because I’m thinking about this letter you submitted.

For the last 5 years or so I regularly think about an exchange that reportedly took place in 9th century China between a dying Buddhist teacher and his student. In our surviving and translated records it goes like this:

Master Deshan was not well and a certain monk asked, “Is there someone who does not get sick?”

The master said, “There is.”

The monk said, “Who does not get sick?”

The master said, “Ouch, ouch!”

After I read this I adopted “Ouch, ouch!” as my mantra and I held it close to my chest for some years.

To keep reading, checkout the full post on my Substack newsletter, where I write under the pen name “Lithium”.