By a person who kinda sorta has chronic pain (I am getting better) <3
First I want to say that all of this is general advice and nothing I could possibly say would constitute a “rule.” Also, this advice is extremely specific to pain resulting from an old injury. My experience is only one person’s, but I thought it might be helpful so here goes.
It is surprisingly difficult to accurately describe pain, especially when that pain is long-term and evolving. My injury was in my knee, under my kneecap, and almost two years out, I still have trouble even identifying if the pain is coming from the top or back of my knee. It sounds small, but it isn’t. Not being able to describe what you’re feeling or where it is can be frustrating and feel invalidating, especially if you’re trying to explain to someone else what’s going on.
It doesn’t always feel like pain, or any words commonly associated with pain (throbbing, aching, etc.) A lot of the time it’s hot, swollen, or even itchy.
When you’re used to something hurting all the time, your relationship to that pain changes. I started to think of it less as pain and more as discomfort, or an “awareness” of my knee that I didn’t have for other body parts. This isn’t denial - my pain threshold had changed, and what might have registered as pain before didn’t affect me in the same way.
Complicating factors, AKA Things That Make It Worse
Something I never ever see addressed, even though “my old bones hurt when it’s cold” is the most common thing on earth:
My leg also swells and gets worse when it’s hot. Extremes in temperature, generally speaking, are both not good for me, but it’s easier to protect from cold than from heat.
Especially for joints, moving in new ways puts new strain on the injury, and that hurts a lot. You might do PT to recover your ability to run, but that doesn’t mean you’ll be able to jump. In fact, if it’s a knee injury, jumping is probably the last thing you’ll get back. Think the same way about hips, or ankles, or elbows and shoulders. Having one thing back =/= getting everything back.
Some things might never come back. I don’t really want to talk about this, and it’s pretty self-explanatory. There’s a lot of grief that comes with that.
Endurance builds back slowly, and isn’t always linear.
I think everyone knows this already, but there are good days and bad days. They don’t follow any schedule or logic. Sometimes I do something knowing that I’ll be in pain that night, but other times I wake up, sit at my desk for a few hours, and realize I’ll have to take 4 Advil to get through the day.
Rest! Physical therapy! Painkillers!
Elevating the injury (above the heart) is shockingly helpful. I was always surprised by what a difference it made.
Sleeping in positions that don’t put stress the affected area. Positions that actively support it are even better! Pillows help a lot with this. Sharing a bed with someone…not so helpful.
Before doing something strenuous, heating up the muscles/joints so that it’s less of a shock to the system when they’re used. After doing something strenuous, ice.
A note about ice packs: Even small ice packs can make you very, very cold. When I’m icing my knee, I definitely need warm socks. If I’m icing my shoulder, I’d want something for my hands. A blanket definitely doesn’t hurt.
Effects of being in pain all/most of the time
It’s hard to sleep! Sometimes I will walk around all day without really processing that my leg hurts, and then I’ll lie in bed and realize that I can’t sleep because I can’t stop thinking about my knee. It doesn’t necessarily register as pain, but I have come to realize that not being able to stop thinking about it = it is pain.
It is hard to ask for help, and it doesn’t get easier. In fact, sometimes it feels like it gets harder. People are less understanding the farther out you are from the actual injury - or at least I worry that they will be.
This one is a HUGE for me.
I know people love to write sweet, long-suffering angels but I really really struggle with that portrayal because
When I am in pain all day/for several days, I turn into a massive fucking bitch. It is exhausting and infuriating and drains me emotionally and physically, even if I don’t notice it happening. I get frustrated easily, I snap at people, and while all my emotions run high, mostly I get pissed off. I understand people want to write the characters they want to write, and I would never ask anyone not to, even if that character is a perfect angel whose response to pain makes me envious and self-conscious. I would (gently) request that such authors reflect on a few things:
Why does your character respond to pointless, unstoppable pain with such bravery or sweetness or stoicism? Where does that response come from, and what does it do for your character and the characters around them? What are the consequences of holding back more “unsavory” feelings?
I would also (again, gently and respectfully) urge people to think hard about the motivations behind having a character who stays kind and sweet and good despite massive amounts of pain and helplessness. What ideas does this reinforce about pain and martyrdom in the disability community? What messages does it send about how disabled people can or even “should” behave?
That’s all I have for now! Please feel free to ask questions, my ask box is always open. Please also let me know if this is helpful to you - I’m considering writing a few more things about disabilities/diagnoses that I have direct experience with, and I’m wondering if people are interested in that.
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