I asked one of my patients, Serena, to help write a blog post about her experiences with chronic pain and acupuncture. Here's what she gave me:
pain… i feel like it has always been present in my life. i know there was a time when i lived free of pain, but i honestly can't remember what that felt like.
i have felt pretty trapped in my body, like i am on the outside of my life, unable to reach the door back in. i feel stuck in the pain and this has caused me to orchestrate my life around it. everything i do, i do with my limitations in mind. i do not take the bus, because i have no idea whether or not there will be too much walking for me to handle at my destination. i do not go to places where i might have to stand for a prolonged period of time or where there will not be adequate seating which means i do not get to go to concerts anymore, nor community events such as fairs or public speakers. i wait until my daughter is home from school to do my errands so she can go into the grocery store, take our dog to the dog park, etc., since these simple things are no longer things i can accomplish on my own. even visiting my friends is a challenge as they all have staircases or long corridors or winding pathways just to get to their front doors.
i used to embrace life. i climbed mountain trails to the top of waterfalls and danced all night under the full moon. i flew by the seat of my pants and never looked back. while in my early twenties, though, i was in a car accident that caused some permanent damage to my lower back. a year after the accident, the chiropractor who was treating me told me there was nothing more he could do to correct the problem and that i would have degenerative problems with this later on. at the time it seemed so abstract that i didn't give it another thought. i went on with my life, now with aches and soreness, but managed well for a while.
a number of years later, as i hit my early thirties, i was feeling the impact of the damage. i was still very active, but with every nightfall came a strong blossoming pain and fatigue across my lower back. i was traveling a lot during that time to festivals and fairs to sell my handmade goods, but started to rethink my choice of career as the gypsy lifestyle began to take its toll. i took a neighborhood job that would reduce my commute to a short walk down the street. i thought this would really help alleviate the back pain. unfortunately, with the diminished physical activity came new problems. pitting edema that had first cropped up when i was in college came back with a vengeance. sitting for most of the day was not at all good for my legs. my knees started to become very achy and i learned i had developed arthritis in them. i became pregnant and gained a significant amount of weight by the time my daughter was born. it was during this time that i realized my back was really in trouble. i was in near constant pain with it and walking became a struggle. i pushed through the pain, but with each step i took, in an effort to minimize my discomfort, i slipped further into the web of pain. i look back on these things now and can see a progression toward becoming less active but at the time i was only concerned with making the pain go away in the moment. i had become depressed and was feeling hopeless. stuck. miserable…
after my daughter was born i gained more weight.. a lot more weight. meaning that it's not necessarily clear how much of my mobility issues are now caused by my weight and how much are caused by the pain. and mobility isn't just about moving my body through space in the physical sense, it's about being in the world, dealing with other people.
i get nervous about going into situations that are unknown to me, places that are unfamiliar. i don't know if there will be a chair that will fit my body. i don't know if people will judge me because of my weight. it's hard enough to be in pain, i don't need the judgment too. when i have to walk in front of other people, i try to walk perfectly gracefully and not show that i'm in pain, because i know that people already think that i don't deserve to be here, out in public, out in the world. when you face that kind of judgment on a regular basis, you can feel it, whether anybody says anything or not. you feel it, and then you can't be yourself.
health care providers can be the worst. in a health care setting, you never know if you're going to be treated like an adult, like a human being. i had an experience in a public health clinic that i'll never be able to forget. i could feel this lump in my abdomen and i was afraid it was something serious. the clinic was a teaching clinic so i ended up standing in front of a whole group of providers and students, and i was mostly naked. they told me the only problem was that i was fat. they told me to go home. they basically said that i can't possibly know what's going on with my own body, because i'm fat. i was so traumatized that i didn't go to a doctor for three years, at which point the lump was diagnosed as a hernia, but what if it had been cancer?
so it was pretty daunting to go into an acupuncture clinic. i have been drawn to acupuncture for a long time but figured there was no way for me to get treatment since i do not have medical insurance nor the funds to pay the prices i had been quoted around town. then a friend of mine told me about WCA. i was desperate enough to try it, because i felt like i had so few options to deal with the pain.
so i walked into WCA, nervously, and i was immediately endeared to it because of how glad everyone seemed to have me here. i felt like every single person i dealt with on that first day, from Sandy at the front desk to John who was my acupuncturist, was genuinely interested in what they could do for me, and in me being in charge. people were kind. i felt like it was OK for me to be where i'm at, that maybe i even deserve to be where i'm at. one of the things that made me happiest was that i didn't have to take off my clothes. and then of course the recliners — when you have mobility issues, getting on or off of a table is really scary, not to mention feeling stable once you're up there. you can feel so vulnerable and exposed. but there just wasn't any of that at WCA. i felt like i could be myself, in the treatment, and that i could get the healing i needed and deserved.
when you're so used to dealing with judgment, encountering even one person who actually does accept you can really lift you up. when you're dealing with chronic pain, everything matters so much more because your world is so much smaller. everything good that happens is like a miracle.
so i started coming to acupuncture once a week but quickly realized i needed more regular treatments to really make a difference in my physical issues.the first thing i noticed was that i started to sleep better. the thoughts quieted and i could actually fall asleep. i've had insomnia since i was 3 years old. being able to sleep is such a huge thing, because when you can't sleep it affects every other part of your life. i was amazed at how much better i felt, just because of that.
coming to WCA over the last 6-8 months, i feel like i'm inching my way back into my life. feeling accepted at WCA made me feel a little bit braver about going out into the world. i'm seeing a blossoming in so many different areas of my life. i know that's how acupuncture works, it's so gradual, but it treats the whole person. my friends got together and bought me a membership to a health club, and i've started swimming a couple of days a week. being in the water is so wonderful because it allows me to have that range of motion. but i don't know if i could have done that before, because i don't know if i could have gotten past the inhibition of being in a bathing suit, being in public, trying to exercise. i had a kind of bad experience with a judgmental, condescending doctor at the health club — but because of coming to acupuncture, somehow i was able to not be affected by his attitude, i was able to think OK, whatever, i'll take what i want from what he has to offer and ignore the rest of it. that's the part i like the most about acupuncture — i know that it's treating my soul.
i deal with my pain easier now. and it has also really helped my focus and my mood. i find i am not dwelling on my limitations like i used to. i am stretching beyond my careful boundaries and a new motivation seems to be developing. i can feel my muscles strengthening as i'm swimming, and i can feel this other, internal strength, just growing and growing. hopefully, eventually, i'll re-enter my life with abandon.
So there are some things that Serena brings up that community acupuncturists need to think about.
It seems like lots of people are getting over their distress about not being able to do all of the things that they learned in acupuncture school in a community acupuncture clinic, which is very good. I am hearing, in general, much less anguish about the lost potential of back shu points, akibani and shiatsu than I used to. So I don't want to resurrect that argument, I just want to point out that there are things you can do in a community clinic that you can't do in a one-on-one setting, ANY one on one setting, no matter how brilliant your treatment or how much you charge. Like allowing someone to be in a community.
A community has enormous healing potential for someone who has been isolated or marginalized –which, of course, pretty much describes everyone who is living with chronic pain, because as Serena describes so eloquently, that's what chronic pain does. But it's also what structural oppressions like racism and classism and all the other -isms do, they isolate and marginalize people. I know that there's a wide range of people who read this blog. Some of you are comfortable with concepts like privilege, and intersectionality, and fat acceptance. And some of you are, well, not so comfortable. For those who are comfortable, or at least willing to push their comfort zone, here are some well-written, thought-provoking links to blogs that address the connections between fat acceptance and: human rights, classism, disability, and feminism.
For those who are uneasy about the idea of fat acceptance, or “political correctness”, or the existence of blogs, period, I would like to propose a new set of universal precautions for practicing community acupuncture.
Every health care provider learns the concept of universal precautions. It's pretty simple and egalitarian: you can't tell what is going on with somebody's blood by looking at that person. So it's best to just assume that everybody's blood is teeming with every possible blood-borne pathogen, and to treat all blood with the same, appropriate level of caution. It's pretty similar for oppression issues. You can't always tell by looking who might be on the wrong end of which oppression. But you can be pretty confident that everyone, at some point, has had interactions with society that make them feel worthless and powerless and hopeless. Your job is, as always, first to do no harm.
And yeah, there are a lot of different oppressions to learn about. There are some issues, like Orientalism in particular and racism in general, that we need to be aware of and do some work around. Any of us white folks with a degree in “Oriental medicine” hanging on our wall — we're obligated, seriously. We signed up for that one. And knowing what your patients are dealing with in their lives in terms of oppression is going to make you a much better practitioner, even if looking at our society from someone else's point of view — someone disabled, someone transgendered, someone old or young — can make you acutely uncomfortable. However, I do understand that all of the people reading this blog who are most likely to take me seriously when I write about this stuff are ALSO trying to start up and run their own businesses. Educating yourself about so many different oppressions may be daunting not because of the pain of facing your own privilege relative to said oppressions, but because your to-do list is already just too long. I get that. So, universal precautions.
Start by assuming that every person who comes through your door is: 1) an equally valuable member of your clinic's healing community, no matter what they look like or sound like or think about anything in particular; and 2) in pain. Whether they show it or not, whether they even know it or not. In ways that you very well might not be able to understand, in ways that you might not be able to do anything about. And that's OK. Because the reason they came through your doors is that they are not just looking for something that you can do for them, but for something the community can do for them, just by being the community.
The community being the community is the organic magic, the big love, the reason that so many CANners don't mind being paid working class wages for doing a “professional” job. The community connects people not only with each other but with themselves. You fall asleep with strangers and you wake up remembering who you really are.
Chronic pain patients often frustrate professionals who pride themselves on their skills. But there's a whole other set of skills that you need in order to support a community being a community. Empathy is a skill. Being nonjudgmental is a skill. Allowing other people to be in charge of their own healing process is a skill. Even being happy to see people, all kinds of people, walk through the door is a skill. You can learn these things, you can practice, you can get better at them and rejoice in the results.
The truth is, it's not complicated or difficult to treat people who weigh 300, 400, or 500 pounds. They are not more trouble than anyone else, and they should never have to feel like they are. The same goes for people who are disabled, transgendered, old, young, non-English speakers, and people living with chronic pain. Acupuncture is simple, and diversity doesn't make it difficult. There is no reason on earth that any of those people shouldn't feel great about getting acupuncture and totally, unequivocally welcome in a community clinic.
Universal precautions don't just protect the patients, they protect us, the practitioners. They protect us from the craziness of making things harder than they need to be. They protect us from the pain of excluding people whom we might end up loving, who might end up loving us and acupuncture and also themselves in a whole new way if we just welcomed them in — if we, like Serena, pushed our boundaries to make our worlds a little larger.
P.S. If you are an acupuncturist in Oregon, next month WCA is offering a 6 hour workshop that fulfills the OMB Pain Management requirement, and it's taught by the fabulous Teresa Keane of the Oregon Pain Management commission (and also a little bit by me). Details here.