About three seconds passed before I started laughing.
The question on the acupuncturist’s form read,
“Please briefly describe any chronic or acute pain you have.”
And there was one single line below on which to write my answer.
For most of my life I’ve been a dutiful form-filler, taking great pains to find just the right words to convey my “problem” to well-meaning practitioners. Populating these documents has always induced feelings of anxiety and inadequacy in me because I have this deep-seated fear that if I don’t offer every last detail and find the right words to articulate the exact scope and force of my pain, I’ll miss out on a diagnosis that could pinpoint and fix the problem. This, my friends, is what you call magical thinking. Sure, for the folks who only need one line for their answer, it can work. (I secretly hate those people.) But for those of us who live with chronic pain, the probability of finding that needle in the haystack that finally, FINALLY cures us begins to wane once our list of doctors and procedures and alternative treatments ventures in to the triple digits. The more money we’ve spent chasing solutions, the greater the possibility that there isn’t one (there may be some things that help, but rarely just one smoking gun.)
Nevertheless we plod on, taking great pains to somehow wrangle every last descriptor and adjective we can find to help the doctor understand what it’s like to live in our bodies. It’s our job. But while sitting at the acupuncturist’s office staring at that one blank line, I made an incredibly freeing decision: to give the hell up. Much like the kid that recklessly guesses at all the answers on his social studies test, I just slapped a few vague, quick words on the line and moved on. When I got to surgeries, I only listed the two most recent because there were only two lines (I’ve had four.) When asked about the meds I take I listed the first few that came to mind and left the others off. (Spare me the lecture about being reckless. If she’d prescribed any herbs I would’ve crosschecked everything.) I left the “accidents and injuries” line blank, foregoing the chronicle of mishaps I could’ve listed: fell off a horse when I was 12 and fractured my leg. Cut off the end of my left thumb slamming it in the door of our tank-like 1971 Chevy Caprice. I was rear-ended four times in one year back in the nineties. I had an avulsion fracture on my right ankle in 2005 and have sprained both my ankles so many times I’ve lost count. And the beat goes on: blah, blah, blah.
I listed Fibromyalgia, Hashimoto’s and Sjogren’s syndrome under diagnoses, but I didn’t mention that I have a jammed facet joint at L5, an anterior labral tear on my right hip or that there’s in all likelihood a paralabral cyst causing all kinds of commotion between the ball and the socket of my right leg. Yes, I did disclose that I had an SI Joint fusion but I had to explain to her what it was. And I don’t think she fully got it, or for that matter, even cared. My experience is that even doctors’ eyes glass over when I try and communicate the sheer volume of mishaps, diagnoses and treatments I’ve endured.
See? It’s exhausting just to listen to the synopsis, isn’t it?
But filling out forms at doctors’ offices isn’t the only communication challenge for those who are living with chronic pain. When your existence is accompanied by constant physical discomfort, you must somehow learn not only how to function, but also how to interact with others in an authentic way that doesn’t load them up with the weight you’re carrying. This can be tricky because a simple question can really complicate things.
How are you?
If I say, “I’m fine,” I am lying.
But if I say, “I’m in a lot of pain today,” the other person may ask,
“What happened? Are you okay?”
When I go that route I usually follow up by disclosing that I live with chronic pain and that I’m just having a bad day. But some people can’t simply acknowledge that and move on. If they keep asking questions I’m back at the acupuncturist’s form again. In weak moments I spring into an explanation, driven at least in part by a longing for someone to see—to bear witness—to my suffering. I want them to understand the magnitude of how this illness has hijacked my life and how exhausting it is to maneuver the basics of every single day. I want to convey the enormous amount of psychic energy it takes to research and weigh treatment options, make decisions about spending even more money I don’t have on things that may not help at all. I want to describe all the cracks I’ve slipped through in western medicine; how difficult it is to advocate for yourself in a system that values passivity and compliance; and I want to explain the calculus I must do every single day in order to decide whether or not I’ll have energy left to do X, Y or Z if I engage in A, B or C. This reminds me of the time my youngest daughter asked about how flowers grow and spread. I’d been aware for some time that the birds and the bees talk was on the horizon—she was 10.
This is it, I thought. She’s ready.
I took a deep breath and launched in to reproductive cycles, continuing on to how babies are made. She sat in the passenger seat of the car, listening to her mother drone on about penises and eggs and vaginas and sperm, completely silent until I finished. There was about a 10 second pause and I decided to leave it alone because she was processing the answer to her question. My baby was taking her first tiny steps toward womanhood. I was so relieved that the “talk” was over and so very proud that she had initiated the conversation. My heart swelled at how well she was taking it. She finally looked up at me with a distinct flair of contempt in her eyes, and said,
“Mom! I asked you about a FLOWER.”
More often than not, that person who says, “How are you?” is asking about a flower. We chronic pain sufferers can’t mistake casual, polite inquiries for an invitation to tell them how we’re really doing, because the truth is too heavy and complicated to bear—even for us. I’ve found that there’s not much in-between. Either I lie or I am flirting with a progression that often ends in frustration for us both. So I usually opt for the former. I hate this, but that means that there’s a huge part of my human experience that stays hidden—even from people who know me well. This says nothing about how much others may love me or care about me. And it doesn’t say anything about me, or my willingness to be transparent. The people aren’t the problem here. Chronic pain and illness isolate us and give us no productive way to process or expose them. They are by nature alienating. Their substance has a high atomic weight, one that most people aren’t inclined or equipped to bear. It’s often a lonely and echo-y space.
But a couple of weeks ago I accidentally came across a book written by an author named Sonya Huber who not only gets what it’s like to live in chronic pain, but also gives a generous and unique voice to many of the things I’ve been unable to articulate. The book, Pain Woman Takes Your Keys and Other Essays From a Nervous System is comprised of short essays that deal with everything from the problem with pain scales to navigating a sex life in the midst of chronic illness.
While I don’t wish my day-to-day reality on anyone, I take great comfort and validation from her creative musings on her own struggle to live with this most unwelcome companion. As a writer I’ve found that approaching the topic is difficult, because at its worst it devolves into a mind-numbing laundry list of symptoms and how they wreak havoc in my life. Who wants to read that? I don’t, even though I share the ailment. I’m overwhelmed enough with my own story; I don’t need a blow by blow of anyone else’s. But what I do need is resonance. Reminders. Alternative perspectives. New metaphors that help me understand myself and give me permission to chill the hell out and stop judging myself. When Huber talks about how inadequate she feels as a mother because she cannot physically do all the things that she imagines “good” moms do (i.e. baking cookies, doing creative projects with her son, etc.) there’s something inside me says, “Phew. I’m not the only one.” I don’t have young children anymore but you’d better believe that I can beat the shit out of myself when I’m unable to keep my grandkids or I have to bow out of something I had planned with family and friends because I am in too much pain. I not only get tired of letting people down, I am also pissed that my body won’t do what I really, really want it to.
Another thing that was super helpful for me in this book is the way Huber describes her pain. There’s this notion among able-bodied people that in order to be genuine, pain has to be constant. If it wavers, waxes or wanes, it must not be real. As a result we constantly second guess ourselves and even carry some residual shame from the implication that maybe we’re making it all up in our heads. Personally, I have fluctuations in location, duration, frequency and intensity. I blame it on the weather or over exertion or what I ate or drank. I think back to how I slept (usually fitfully), the medication I did or didn’t take, my exercise (or lack thereof), my hectic schedule or my stress level. The truth is that all of these things can and do affect my body, so I have to do what I can to manage them. As Huber says,
“My body requires a net of 10,000 things and is no longer contained within its own skin.”
But I can’t ever trace ONE pattern that applies forever and ever amen. The assumption is that if I could figure it out, I could fix it.
Huber says she can distract herself from the pain by playing games on her phone, watching Netflix or writing. People who are pain free have this idea that true pain can’t be fluid or distractible. Not true. The pain of a broken leg isn’t going to fluctuate much until it is set. But a tripped out nervous system is something altogether different. Experts are trying to trace its outline but no one really understands what is happening and why sometimes that hypersensitive pain switch gets flipped. Just because we don’t understand it doesn’t mean it’s invalid. Trust me: it’s valid AF. And it felt really good to hear someone else say, “Yep. It’s real. Same thing happens to me.” I felt like Huber was testifying on my behalf.
There were multiple moments while reading her book that I uttered a “Yes!” or “Mmmmh” out loud. An example:
“Pain itself is a weird experience, but you get used to it. It’s as tiring as parenting a newborn. It creates so many interesting conundrums and challenges. You can imagine it as adding a World of Warcraft addiction or a constant remodeling of one’s kitchen to your already busy life. That’s what it’s like: a weird project you have to manage in addition to everything else you already have going on. A weird project that will never go away. Imagine remodeling your kitchen for the rest of your life.”
Other topics I really connected with: her discussion of gratitude and what exactly that means for a chronically ill person (this essay is contained in a section entitled, “Bitchiness as Treatment Protocol,” which offers a clue about her feelings toward those who throw around aphorisms about being grateful. And yet, she eloquently considers the power of gratitude.) She dissects pain in a way that acknowledges both its odd beauty and vicious ugliness. She personifies it and gives it the benefit of the doubt
“Pain does not mean any harm to you.”
“Pain is wild with grief at the discomfort it causes.”
“Pain has something urgent to tell you but forgets over and over again what it was.”
“You must look pain in the eyes like a child and tell it not to be afraid of itself.”
I could go on and on, but suffice it to say that if you live with chronic pain, you should read this book. I checked it out at the public library, but loved it so much I bought two copies: one for a friend and one for myself. Reading Huber’s vignettes and stories gave me a renewed aim to be gentle with myself, to let myself off the hook. Just because others can’t see my pain and I choose not to disclose it doesn’t mean that I have to push myself to do all the things others assume that I can. But unfortunately, that doesn’t mean that I won’t.
**NOTE TO THOSE WHO’VE BEEN FOLLOWING MY SI JOINT FUSION: I’ll offer an update on all that next week. This topic was really on my heart, I needed to write about it and this seemed like the best place to do it.**