Margaret Weems
Guest Blogger
Ask anyone their greatest fear, and many will answer "a slow, painful death." For those in chronic pain, a longer life can be scarier. I've experienced 32 years of it, beginning at age 23. I need one of those 26.2 marathon stickers, or reward points, or maybe a silver jubilee?
Chronic pain is invisible but relentless — the presence of much that is negative and the absence of much that is positive. It's the lemon of a car you can't leave; the ball and chain you can't divorce; a heavy backpack you can't shed; the recurring bad dream you awaken to, daily. You must redefine success because effort and outcome are so loosely linked. No one organizes charity walks for a cure. Platitudes like "time heals all wounds" and "this too shall pass" don't account for the negative momentum of the aging process — osteoporosis, fractures, and inactivity — to an already-injured body. I was old when I was young, so I'm an early bloomer to "okay, boomer." The medical profession has little to offer us, partly from pressure from governmental agencies, lawyers, and politicians. A mostly male subgroup, using drugs recreationally, has made life more difficult for chronic pain patients, who are overwhelmingly female. Only one doctor was willing to prescribe the only controlled substance I take - Ambien for insomnia. (For two decades, I was on one or two Vicodin and one Klonopin a day, but my rheumatologist stopped prescribing them in 2013, so I had to wean myself off.) A year-long, non-healing foot fracture led me to a pain clinic in 2022. They do spinal injections, but have almost nothing for systemic pain. It took Stage 4 terminal cancer for my mother to get adequate relief from her decades-long pain. This is (somewhat understandable) fallout from the opiate epidemic, but how many ways can society say "your suffering doesn't matter" before you believe them? If you complain, you're being negative or seeking attention. If you're stoic, it must not be that bad. I contribute to the illusion by reflexively acting better than I feel, faking it, instinctively, like a herd animal evading a predator. There's a "lazy or crazy" stigma to invisible illnesses, and we absorb the shame as if it were true. Our go-to response is minimizing our struggle by lighthearted self-deprecation, to make others (and ourselves) more comfortable. ("I'm an unmarried housewife who volunteers for Facebook!") It's essential to avoid self-pity and hopelessness, but there's a cost to masking a reality that is constantly wearing you down. Our brains evolved to prioritize pain, and anything the brain does often, it does well. The longer you're in pain, the more real estate your gray matter devotes to it. (Like eminent domain, without the monetary compensation.) We're the dog who can't quit chasing its tail, trudging along on the Sisyphus trail. Albert Camus redeems Sisyphus' plight with the idea that "crushing truths perish from being acknowledged." Pain — indeed all unwellness of body or mind — must be addressed. Coping is only possible through transcendence. And seeing humor and beauty in everything. Nothing has taught me more than this boulder-shoulder slog. You must be curious and mindful to steal the thunder from fear. Hypersensitivity to pain lowers your threshold for joy and inoculates you to pettiness. Imagining I have only six months to live settles me; the 'hard, constant' immediately has a term limit. And scarcity imbues value, recasting the pain as a minor character, somehow. It enables me to focus on sensations that are pleasant or interesting, not the noisily barking ones. Love towers above them all, infinite. Chronic pain sufferers can't — and don't — expect understanding, as no one can know the experience of another. (Although expressions of compassion are always appreciated, because the human factory setting appears to be judgment.) But we can use our hard-won emotional endurance to help others. I'm blessed with a network of family and friends, but only a few who are disabled and only one whose pain has led to suicidal thoughts. Those most likely to understand us live equally isolated lives, so where do we find Our People? Those who love us the most also hurt for us the most, so how do we cope without inflicting collateral damage? The WhiteFlag app brings birds of a feather together, when you need it most, for free. When you feel most alone, let them show you that you're not. To paraphrase Camus, we are stronger than our rock.
__________
Get support. Give support. Download the app today.