Thread by @ShannonDingle

Things you should know about those living with chronic pain:

1. We minimize our reality because we don’t want to be seen as whiners & because we’ve noticed the “she had cancer & never complained once” stories that are usually bullshit but still consumed happily as inspirational.

2. We carefully curate our stories so we aren’t othered or pitied. I woke up in the middle of the night earlier this week, needing to pee. I had to take pain medicine and wait uncomfortably for it to kick in before I could manage to get out of bed. But that’s too sad to post.

3. We notice all the Christian testimonies about healing. We see celebrations over those. We wonder if you’d be willing to see God or even see us in our stories, the ones in which prayers for healing are answered with no or not yet or silence.

4. Being a freelance writer with disabilities & chronic pain is hard. I almost never pitch a story without having it written first. Otherwise, I don’t know if I’ll be able to follow through. Feeling okay right now doesn’t mean I’ll feel good in a few days when the editor says yes

5. We’ve tried whatever medical suggestion you’re ready to offer, or we’ve ruled it out. It’s condescending to act as if you know our reality well enough to offer medical advice that we and our doctors have overlooked.

6. If you financially benefit from selling us on whatever health “fix” you’re peddling for our healing, don’t lie to yourself. Your sales pitch is self serving, not compassionate or caring.

7. We sometimes feel like we have to share private medical details to avoid being judged. Please, show grace without demanding our stories first. Worst case, you give someone grace who doesn’t deserve it... which is the definition of grace, so I don’t see the problem.

8. Some of us were disabled or injured by abuse or other traumatic circumstances. It’s lovely when someone asks “is the story of how this happened something you’re willing to share?” or something like that instead of “why’d you need that surgery?”

9. The opioid epidemic is real and problematic. Some of us still need opioids at times. Both of those statements are true. When talking about treatments and policies, we want both acknowledged in the debate.

10. We hate canceling plans. We might even avoid making them, just so we don’t have to cancel on you. Please try to understand and don’t give up on us.

11. Pain pills are often constipating. If we’re acting like we have something stuck up our asses, it might be in part because we do.

(Note: I’m well medicated right now. I may regret this tweet and others later. But I don’t care.)

12. I like sex. I want to have sex. My husband likes and wants sex too. We connect well/differently through intercourse than we do through any other activity. Chronic pain means we have less sex than we’d like. That’s a detail and frustration we usually hold private.

13. When you ask “how can I specifically pray for you?” we usually won’t bring up sexual dry spells or frustrations. That doesn’t mean they aren’t there.

But to demystify this and because sex is good, I might start answering “sex” to the prayer request question.

14. When you ask how we’re feeling, we might answer aspirationally instead of honestly. It can be a hard question to answer. I want to be fine, but I’m not, and I don’t know if you even want the real answer anyway.

15. “You’re too young to have all these health issues.” Yeah, that’s not helpful. (Something like “oh, this must suck to be dealing with this in your 20s/30s” is a more empathetic approach if you want to go there.)

16. Chronic pain has done universal aspects, but all of our stories are different. Like anyone else, we just want to be known. Knowing our pain is part of that, but it isn’t all of who we are.

17. Sometimes people say “I can’t imagine” as a copout & a lie. Maybe you can’t. That’s legit sometimes. But often people say that when they are imagining the reality, starting to connect with our emotional & physical realities, and then recoiling because it feels like too much.

18. “I could never do that” is usually a lie and a copout too. I don’t love giving myself shots every week. I would have probably said I could never do this. But then I needed to, and so now I do it.

19. It’s really hard to have a gazillion specialists. You have to act as the coordinator among them all and the source of the big picture. That’s one of the problems with complex medical care in our country.

20. When people brag about not taking any medication ever, I want to say, “yeah, having privilege is awesome, huh? Like, I love how my ancestors weren’t ever enslaved, but I don’t really think that’s a bragging point.”

21. When people rant about the evils of the pharmaceutical industry, I want to scream that drugs literally save my life every day.

22. “But doctors don’t want to heal people. They make money off sickness.” This nonsense - plus claims that cancer has a cure but it’s being hidden from us - is bad science and bratty insults. Do you really think that poorly of medical professionals?

23. Some days have less pain. Those days are fabulous.

But they don’t mean we’re all better. A great day is a great day, not a cure.

24. Hallmark cards for sickness are focused on feeling better soon. Some of us don’t, though. Some of us won’t. Sometimes the cure doesn’t come.

People with chronic illness don’t need “get well soon” friends. We need ones who are willing to stay and hold space when we don’t.

25. When people have acute illness, we know how to show up. Meals. Babysitting. Specific offers of help. Texts. Flowers. Edible arrangements (which I love)...

We don’t know how to show up when the hard stretch isn’t time limited. And I don’t know the answer to “how can I help?”

26. At our last church, I shared how we were struggling & really just wanted help finding a small group, & the pastor listed every way they had helped so far - meals. rides. texts. so on. - & then said “if you want anything more, I don’t know what to say.”

That hurt. We left.

27. More often than not, though, Christian friends have loved us well through chronic illness and pain. (Even as Christian institutions haven’t at times, like that pastor who pointedly said “your family uses more resources than any other family in our church, by a long shot...”)

28. Helpful offers of help for those of us in long-term health struggles: doing laundry, helping our kids with homework, having a once-a-week meal sign up for long term, coming to clean or hiring a cleaning service for us, come pick up a kid or 2 for a fun outing, text memes...

29. Chronic pain is lonely. I still want to know about your life too, so please stay in touch, & not just to check on us. Don’t feel like you can’t share the good of your life w me or like you shouldn’t share the bad if you don’t think it’s as bad as mine... friends share it all.

30. If you’re showing up to be a friend and not just fix me, then I don’t mind if you ask “have you tried...?” But if you don’t know me when you ask, you’re saying you don’t want to deal with the mess & you’d rather offer uneducated quick fixes. Do you care if you can’t fix it?

31. Sometimes I look sick. Sometimes I don’t. Sometimes I dress nice and put on makeup when I feel awful in hopes of cheering myself up. How I look isn’t a great measure of my chronic pain.

32. Hearing healthy people complain about contributing financially or otherwise to healthcare systems that keep sick people from dying or living in agony... well, that tests my sobriety, y’all. I won’t minimize your hardships, but please don’t act like it’s all the same.

33. As a white married woman whose husband’s income supports our family, I’m among the most privileged people living with chronic pain. These hardships are amplified for those who don’t share my privileges (white, straight, cisgender, married, financially stable, educated, etc.)

34. Please don’t fart near someone in a wheelchair if you can avoid it. We’re at the same level as your anus, and we’re cropdusted more than anyone realizes.

35. I’m sure I’ll have more to say later. But that’s it for now.

Oh, one more...
36. All the “what not to say” lists might make you scared to say anything. Use those as educational pieces, but PLEASE risk insulting instead of isolating. You might mess up. You probably will. Friendship involves vulnerability and risk. Risk it if we’re friends.