I'm Going To Be In Pain Forever

Or: How we might deal with suffering using this one weird trick (zen koans)

Jul 01, 2023

Hey folks, thanks for tuning into Dear Lithium. I know I’ve written about chronic pain and illness before, but it’s a subject that I have a lot to say on. While it may seem that this is specialized advice for just sick people, I have news for you! You are also sick people, I see your browser history you fuck. But seriously. One day you’re going to get sick and die. Enjoy the read!

Ask your own question.

Dear Lithium,
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. I think it’s safe to say that the monk who asked this question knew that everyone is subject to illness; any child could tell you that. Instead, perhaps, the monk is inquiring about the human spirit. Yes the body can get sick, and as we know in today’s industrialized society, yes the mind is quite prone to illness as well. But there’s something in us that’s more than our minds and is more than our bodies. Is that exempt from sickness?

The master, Deshan, confirms: yes, there’s someone that cannot become ill.

The monk wants to know, okay, so like. What’s the thing that can’t get sick? Who is that? Is that me?

As in most Zen koans, Deshan does not provide us with a straight forward answer. Ouch, ouch! Oh the agonies! It hurts it hurts! Wink wink. Nudge nudge.

As I mentioned to you on instagram.com I’ve been in chronic pain for 20 years now, which is well over half my life. To this day I still hold out hope that I’m going to get a more accurate diagnosis, a diagnosis that has a treatment. I have 3 different diagnoses that all result in pain and I’m skeptical of each one. In this age of seemingly limitless knowledge it’s difficult to accept that our knowledge has real, visceral limits. Part of me knows that effective treatment will likely never arrive. But this other part is like, yeah okay, but what if.

And so then I can’t let go. I really want to let go, because it’s stressful to always wonder that, if I just take the right combo of supplements would my pain resolve? It’s stressful to wonder. It’s stressful to be in so much fucking pain 24/7.

As you say, dealing with this not-knowing is so very difficult. Should I keep working at physical healing or is this just a two decade long waste of time? I still focus on it some, but mostly these days I’m focused on my emotional health. I actually think that I am capable of getting some of that under control

The advice I can offer to you is this: the more you’re able to calm your mind and your heart around this matter, the better off you’re going to be. Not to say doing so will improve your physical state, it probably won’t. Just to say, find the person that does not get sick, the person who does not feel pain. They might be screaming “ouch, ouch!”

P.S. I was delivered the “forever” news in the same way. And as a total aside I’m wondering if you’re describing Ehlers-Danlos Syndrome (EDS) as your diagnosis. Bizarre fact: one study on EDS found that 17% of it’s adolesent paitents identified as some form of transgender (transsexual, enby, agender, etc). In the general population trans people are thought to make up just 1% of folks. It’s not known why so many trans people have EDS/vice versa but the correlation is wild as fuck. I personally know three trans people with it, which is crazy for such a rare disease.