Of Spoons and Skepticism: Chronic Pain 11:00
Ania Bula, Stephanie Zvan, Mitchell Greenbaum, Emily Harte, Emily Finke, Chana Messinger
Ania describes what it’s like to have Crohn’s and the pain involved.
Emily Finke has a hip displacement and needed reconstruction on both of her hips. This led to pain through her whole life.
Caitie has degenerative disc disease from a car accident. Often has to plan her day around when she takes her meds and her appetite stimulants.
Mitchell has tendinitis and myofacial pain syndrome (uncertain whether this is helpful).
Interesting that for many of these people their diagnoses don’t seem to have helped actually deal with the pain or life quality.
Chana wants to make sure that we all recognize how brave it is for all these people to be here when they’re always in pain.
How does this affect your life and your participation in skeptic community?
You have to plan. Mitchell gives the example that he can’t be too sedentary or too active and has to plan exactly how much to move. Generally it’s not something that comes and goes, but rather is something that is better or worse.
Spoon theory: what it’s like to be in pain all the time.
This is also often applied to mental illness.
This leads to a lot of balancing what will be good for them vs. being social or getting things done. You might have to miss out on stuff to be able to continue to function. You may have to do things that make you look unprofessional, etc. Always on your mind.
Emily has very unpredictable pain due to the mechanical nature of her pain. One day she could be doing really well but if something goes out of whack she can’t walk up stairs. Perceived as lazy.
Ania: pain isn’t visible. People view you as lazy for that reason. Lots of intersections with pain and weight and people make judgments.
Mitchell has a friend who is often told her whole problem is being overweight and the medical industry often blames weight for pain more than they should. A lot of doctors want to point to structural issues as the cause, but many times it’s not and we need to recognize that.
Caitie gives us an overview of her day and how meds dictate a lot of it. One myth is that people with pain get high or get euphoria off of their meds, whereas what they actually do is barely make things tolerable. Caitie plays soccer and many people judged her for the fact that she can’t keep a full time job when she can play soccer: what’s invisible is pain afterwards and extra meds, etc.
Mitchell wants to point out that there is variability that isn’t obvious and leads to other people judging that people in chronic pain are just choosing to be lazy in some cases.
Can you talk to the people in your life about it? How can they better support?
Ania organizes and plans a lot of CFI Ottawa events. They did a march a while ago and she became concerned that she would plan a whole march but couldn’t participate. Her community came together to make sure she didn’t miss it with a wheelchair. At WiS Ania asked hotel if she could use a wheelchair and everyone was incredibly helpful about making it accessible. Ania wants more talks about chronic pain and chronic disability, particularly invisible ones.
What is difficult about explaining your illness to others?
Caitie suggests that we make our start and end times more accurate so that she can plan accurately.
Mitchell sometimes needs to get up and move around at events, sometimes in the middle of a talk. It’s hard to distinguish what’s rude and what’s not.
Ania wants people to drop the phrase “but you don’t look sick”.
Caitie seconds that and adds “have you tried x”?
Ania had someone try to give her greenwater (ick). ANIA TRIED THE SWAMP WATER. Unfortunately it produces gas and Ania has Crohn’s. Bad combo. Guy who gave it to her told her that was normal. NO. A common one is “have you tried marijuana”?
During a particularly bad time for Ania, she didn’t want to go to the hospital and miss work. Her roommate was a stoner and gave her some pot. It helped! She hadn’t been eating because of nausea and she finally got to eat. She has to use it sometimes because it has longer lasting effects. Her doctor thought he couldn’t get her a prescription though because of misinformation about it. Once he realized he could prescribe it he did and was excited about it.
Again, I’m noticing a lot of similarities between the chronic mental and emotional pain of mental illness and the chronic physical pain of a disease. I wonder if we can have more dialogue between these two communities to cross-fertilize ideas.
Caitie mentions that because marijuana is unstudied it can be dangerous for doctors to prescribe.
Emily limps so people assume she’s in lots of pain. It gets on her nerves when people act pitying or condescending. SHE FUCKING GETS TO WEAR HEELS REGARDLESS OF WHETHER OR NOT SHE HAS A LIMP. Heels are more comfortable for her.
SICKNESS POLICING. Ania has had lots of people ask “are you sure you should be doing…” YOU DON’T KNOW ANYONE’S BODY BETTER THAN THEY DO. Ask what you can do, don’t assume. Ania wants help with doing dishes, so someone get on that. When you go out of your way to open doors for someone with chronic pain but not for everyone, it others them. Also ignores invisible disability.
Don’t comment on how often somebody goes to the bathroom. Especially for someone with Crohn’s it’s uncomfortable and embarrassing, even though they joke about it themselves. It’s judgement.
Isn’t this just something that should apply to everyone?? WHY WOULD ANYONE EVER COMMENT ON SOMEONE’S BATHROOM HABITS?
As skeptics we know some chronic pain sufferers do believe in woo. How do we manage that conflict?
Caitie thinks we just shouldn’t judge because it’s none of your business.
What about if you know someone is doing something that has no evidence and there is a more effective treatment, should you leave it alone?
Caitie says YES. You don’t know their history! You don’t know what they’ve tried.
As someone who goes to a chiropractor, the placebo effect can be the best.
Mitchell takes acupuncture as an example. No good evidence for it, but if someone uses it and says it’s good for them, don’t get in your face about it. You can generally advocate against it without trying to take it away from one specific person. For a while he was being treated with “dry needling” (ick ow that sounds horrible). It’s a treatment that is worth doing more study on though, we don’t really know. Acupuncture lobby is trying to limit people’s ability to use this. It’s a good example of how woo treatments become industries that defend themselves.
Ania wants to point out the difference between criticizing woo treatment and attacking the individuals partaking in them.
Emily says that just because something might work for certain things (chiropractic works for back pain) doesn’t mean we should assume it works for everything.
Caitie will take the flipping placebo effect if she can get it (AMEN TO THAT).
Ania’s problem with the pain scale is that it’s subjective because 10 is “worst pain you’ve ever felt”. Doctors don’t recognize that if your pain goes REALLY HIGH then a 6 or 7 is still serious. Shaming someone for using alternative medicine is the worst thing you can do. WHO THE HELL CARES IF ALL YOU GET IS THE PLACEBO?
Mitchell is gonna call out all the skeptics who say they would never try acupuncture even if they were in chronic pain. BULLSHIT. There’s a special headspace you get in to when you’re in chronic pain and it’s cruel to take away something they feel might help them.
Ania says extreme pain puts you in a place like psychosis. You get weird ideas about what will help, like smashing your head against a wall helping a headache. We do need to regulate though because much of it is a scam and much of it is legitimately harmful (a woman’s lung collapsed because of acupuncture). Chronic pain patients might be more effective advocates against alternative medicine because they’ve been there. Most people get introduced to alternative medicine through friends and family, so you’re trying to reach support networks. Family gets desperate too.
Chana sees some parallels between the language used to describe chronic pain and religion by people who are actually sympathetic (e.g. If it helps you, then ok, but I’ll address it on a systematic level).
Caitie’s worst experience was epidural steroids and nerve blocks (I’m in pain hearing about these things, you guys are amazingly strong for getting through this). These intense experiences only gave one week relief.
We have four people with four very different chronic illnesses: what are we to make of the fact that there’s such a consistency of experience?
Mitchell sees a lot of similar causes for similar experiences: you have pain and you manage it. There are common experiences of managing it and common experiences of people making assumptions because understanding isn’t very good. Resource: saveyourself.ca, book called Explain Pain, Laura Mermosley and David Butler. Alltrials.net: everyone get there! It’s a campaign to put all trial results out. Currently the results that “prove” a hypothesis are way more likely to get published.
How do we educate about all the different kinds of chronic pain? As mentioned, even these four people have vastly different types of pain, how do we get information out for all the different kinds? Should we focus instead on common experiences?
Ania is gonna plug her book! Encourages places like CFI and American Atheist to get more chronic pain people on panels. Sarah Mowglia’s blog is great. There is a new skeptical forum that she’ll post in chat. On Facebook there’s Skeptical Spoonies. Read about chronic pain sufferers’ experiences. There’s a lot of similarities across experiences despite different causes.
Emily says LISTEN! Self-advocacy is good too.
Ania will be in Pharyngula chat for questions and is open to emails and comments.