As I read your essay, I thought of a friend who I am sure suffers fibromyalgia, which is like bodily migraine. He gets furious at the mere mention of the word, swearing he suffers from something that is "real." What he has is real. But pain-shame keeps him visiting spine specialists and the like, one of whom suggested he see a psychiatrist when no remedy would work to ease his suffering. Like a lot of sufferers from free-wheeling pain disorders, he smokes a lot of pot, but pot's potency is ever more diminutive. What amazed me about Emily's poem is how transformative her experience was. She seems to have experienced death itself and resumed her life as if it were an afterlife. As a sufferer from chonic, ever-worsening lower back pain, I may soon have to start using a cane just to satabilize myself. But then dread of needing a motorized wheel chair sets in and I think somehow bearing present pain will postpone any such eventuality. It is stupid, I know, and I'm glad you started this forum on common and acute pain-disorders. We need to know we are not alone. We need to feel fellowship in our stress. You have performed a great service. Thank you.
And your back pain seems to mimic the "flares," the piteous ebbs and flows of other chronic illness like migraine; I recall in childhood that your back was sometimes "out" and sometimes not "out," and that cycle of discomfort is so familiar. I was happy to recently discover "spoon theory," a way for people who live with chronic pain to express how health issues impact their ability to complete everyday tasks and activities. It is a helpful framework for managing and explaining your capacity for basic life stuff based on your degree of pain on a given day, and is embraced by people with back pain, fibromyalgia, lupus, migraine, rheumatoid arthritis, and many more. Here's a good explainer: https://www.washingtonpost.com/wellness/2023/01/14/spoon-theory-chronic-illness-spoonie/
Great read on a topic that’s core to our shared humanity. It's crazy all the bad stuff that can happen to a body. I guess it makes sense that so many great writers suffered from pain. When you’re in pain you want to be still, maybe be alone, desperate for a brain escape. Writing might make your pain hurt less, because it feels like it’s moving through you.
I work in an oncology/autoimmune infusion center, so I think a lot about what it’d be like living through a major health illness. We definitely need to do more to support people. But I also think we need to do more to prepare people. Anyone’s world can go from wellness to illness overnight.
Personally, I’ve only had one full-fledged migraine. Early in my second pregnancy, I was so nauseous that I quit coffee cold turkey. I swear that headache pain was worse than the pain from unmedicated childbirth to my 10+ pound baby eight months later. Now in my 40s, I have hormonal headaches — yep, twice a month. They feel like my brain’s being suctioned. One good thing about menopause is many women find their headaches get better, or even go away.
"They feel like my brain's being suctioned." That's a fantastic way to describe it.
You make a good point too that we need to support and prepare people for illness; anyone can become disabled or sick at any time and the world could do with more compassion in light of that reality.
Also, my mother is one of the lucky people whose headaches disappeared after menopause and I'm hoping the same proves true for you and for me!
As I read your essay, I thought of a friend who I am sure suffers fibromyalgia, which is like bodily migraine. He gets furious at the mere mention of the word, swearing he suffers from something that is "real." What he has is real. But pain-shame keeps him visiting spine specialists and the like, one of whom suggested he see a psychiatrist when no remedy would work to ease his suffering. Like a lot of sufferers from free-wheeling pain disorders, he smokes a lot of pot, but pot's potency is ever more diminutive. What amazed me about Emily's poem is how transformative her experience was. She seems to have experienced death itself and resumed her life as if it were an afterlife. As a sufferer from chonic, ever-worsening lower back pain, I may soon have to start using a cane just to satabilize myself. But then dread of needing a motorized wheel chair sets in and I think somehow bearing present pain will postpone any such eventuality. It is stupid, I know, and I'm glad you started this forum on common and acute pain-disorders. We need to know we are not alone. We need to feel fellowship in our stress. You have performed a great service. Thank you.
Uggh, how horrible fibromyalgia seems, and so many like your friend struggle for years to find answers from doctors. I dug up this NYT piece that I recalled with firsthand accounts from people who suffer: https://www.nytimes.com/interactive/2018/well/patient-voices-fibromyalgia.html
And your back pain seems to mimic the "flares," the piteous ebbs and flows of other chronic illness like migraine; I recall in childhood that your back was sometimes "out" and sometimes not "out," and that cycle of discomfort is so familiar. I was happy to recently discover "spoon theory," a way for people who live with chronic pain to express how health issues impact their ability to complete everyday tasks and activities. It is a helpful framework for managing and explaining your capacity for basic life stuff based on your degree of pain on a given day, and is embraced by people with back pain, fibromyalgia, lupus, migraine, rheumatoid arthritis, and many more. Here's a good explainer: https://www.washingtonpost.com/wellness/2023/01/14/spoon-theory-chronic-illness-spoonie/
Great read on a topic that’s core to our shared humanity. It's crazy all the bad stuff that can happen to a body. I guess it makes sense that so many great writers suffered from pain. When you’re in pain you want to be still, maybe be alone, desperate for a brain escape. Writing might make your pain hurt less, because it feels like it’s moving through you.
I work in an oncology/autoimmune infusion center, so I think a lot about what it’d be like living through a major health illness. We definitely need to do more to support people. But I also think we need to do more to prepare people. Anyone’s world can go from wellness to illness overnight.
Personally, I’ve only had one full-fledged migraine. Early in my second pregnancy, I was so nauseous that I quit coffee cold turkey. I swear that headache pain was worse than the pain from unmedicated childbirth to my 10+ pound baby eight months later. Now in my 40s, I have hormonal headaches — yep, twice a month. They feel like my brain’s being suctioned. One good thing about menopause is many women find their headaches get better, or even go away.
"They feel like my brain's being suctioned." That's a fantastic way to describe it.
You make a good point too that we need to support and prepare people for illness; anyone can become disabled or sick at any time and the world could do with more compassion in light of that reality.
Also, my mother is one of the lucky people whose headaches disappeared after menopause and I'm hoping the same proves true for you and for me!