By Sonya Huber
A friend at a writing conference asked me how I was doing. I said, “Pretty good, all things considered.”
“That’s good,” he said. “All I see on your Facebook page is ‘Pain, pain, pain.’”
I gave a half smile and a knowing shrug to get away from the conversation, but my brain buzzed with distraction, embarrassment, annoyance, and a bit of curiosity. That’s all I’d managed to leave as tracks on his brain: pain? Was he razzing me in a failed attempt at flirtation, or maybe trying to be sensitive in a backhanded way?
Then I began to worry that I’d set up an inadvertent Wailing Wall on social media, even though I’d tried to do the opposite. I had made a conscious decision to post as little as possible about my medical adventures with Rheumatoid Disease and Hashimoto’s thyroiditis.
Sure, I needed to vent. After scrolling past enough pictures of people’s dinners, rock-climbing feats, and dogs, I felt compelled to put a bit of myself into the maelstrom. And sometimes I wanted to share that my small life was also part of the big picture of life, even if it was posted from flat on the couch.
The last thing I wanted to become on social media was what I felt like in real life: pain, pain, pain.
When I was in college, a young woman in philosophy class told us that she had chronic pain from ulcers. I couldn’t fathom it. Pain, like stubbing your toe, but all the time? Wouldn’t that drive you bat-shit crazy? She was beautiful and a campus athlete, and I began to revere her from afar as some kind of saint, which was the reference point I had for unrelenting suffering: that it ennobled.
Lucky for me, I had exactly twenty more years to live my lovely normal life, filled with sex and sports and walking and soccer and sleeping late and hardly ever having to fill prescriptions. My body could swing and shake and dance for hours. Eventually my immune system revved up into crisis mode when I was in my late thirties, which catapulted me into rheumatoid disease. It’s systemic, autoimmune, and incurable. My joints hurt pretty much all the time. I’m four years into the rest of my life, the part that comes with pain.
Since then—in case you’re tempted to share with me your quick fix—I’ve tried everything, and I manage stuff like a pro. Supplements, exercise when I can, a new diet, medications, acupuncture. I work it like a job, and I have to say I am as responsible as one can possibly be in caring for this very needy pet. But although pharmaceutical company commercials want us to believe that new drugs make life better for everyone, the drugs for my condition don’t work all the time, and they don’t erase pain.
Pain itself is a weird experience, but you get used to it, even if it does drive you a little bat-shit crazy. 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 that 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.
People who don’t know pain think it is really depressing. This makes sense, because it is the core biological imperative for preservation of one’s existence: avoid pain. Run, in fact, from any mention of it.
When I post on Facebook about being in pain, or admit to pain in a casual face-to-face conversation, I read the winces in the emoticons, and I feel and see the edges of my friends’ mouths pull back in grimaces of displeasure, winces of agony, as if they themselves are feeling discomfort. As if, in mentioning it, I am the one hurting them. They don’t want to talk or hear about pain. But they have questions, and they are embarrassed to ask. Some friends do ask, and I have loved how they listened as I tried to describe it. I feel very cared for in those moments and immensely relieved.
It’s hard to figure out what to do with this pet Pain I have if I can’t post picture of it on Facebook. It’s not going anywhere, and yet the thought that it makes other people uncomfortable adds to my own discomfort. Not only do I have a physical problem to deal with, but I also have to feel guilty and watch that I don’t inflict thoughts about pain onto other people like some kind of social contagion. People want to fix pain or to convince themselves that it’s not that bad. They want to tell you their grandmother cured her osteoarthritis with cactus juice. I’ve done the same for different difficulties, responding with vague clichés about “what makes us stronger” when friends have lost parents, marriages, jobs, and medical battles.
It’s hard to know what to say. It’s easy to say the wrong thing in those situations.
Sometimes it’s harder to watch someone we love suffer than it is to suffer one’s own pain. I can’t do anything about this pain (aside from seeing my doctors, getting on the treadmill, and eating turmeric and fish oil like candy) but at least I can know it. And that’s what causes anxiety for others, I think, and for me when I’m on the other side of a skin barrier from pain: it is unknown, unfathomable.
I decided to read through a year’s worth of my Facebook posts to assess whether this friend’s comment about “pain, pain, pain” on my Wailing Wall was accurate. Because I love Facebook, I had hundreds of my own inane status updates to click through, mostly quotes about writing, teaching, books I loved, political activism, or events on my campus. I had posted links to articles on fighting racism, pictures of my family, jokes, laments about my dying car, and a photo of a squash that we’d kept on my kitchen table for over a year because my son drew a face on it with a permanent marker. I posted about getting solar panels, my love of the cartoon Adventure Time, and many thoughts on the Affordable Care Act. I posted ideas for imaginary band names and jokes about Star Wars, as well as an update on happened when I spilled a full can of seltzer on my desk. I posted about the sport of soccer-tennis, a trip to Hong Kong, kayaking, and the zombie apocalypse.
Throughout the whole year—June, 1, 2013 to June 1, 2014—I discovered six posts about my illness. Three of these were not about my own situation, but instead links to content created by other people: a graphic about national awareness day for Rheumatoid Disease, a link to a survey about Rheumatoid Disease, and a link to a book about coping with chronic pain. The remaining three posts gave updates about my own health situation, all within a few weeks last summer in which I had a thyroid crash and was having problems with my energy levels. One was a simple apology that I was having trouble returning emails in a timely fashion because I wasn’t feeling well. The second: “When I have the energy, I’m going to write about finding the energy to parent with an autoimmune disease.”
And the third: “It turns out that giving up caffeine after a 22-year habit is actually not that big of a deal if you have RA. I have learned this morning that my pain tolerance and my pain levels are both so high that a teeny little caffeine headache barely registers. It’s kind of cute, this little chemical headache trying to act all important.”
Two posts for the entire year had mentioned “pain” by name.
In that last post, I injected some humor, as I know I should when talking about illness, as a way to sweeten the subject and not drag my friends down, but also because it’s one of my own coping methods: I have to laugh at it. At the same time, I was trying in that status update to give myself a little credit: I do have a high pain tolerance. People in chronic pain are often desperate for a sense of how others might experience their level of pain, not to share the misery but because they would like to know whether they are merely being overly sensitive or whether they are dealing with something that is as epic as it feels.
This is all complicated by the fact that pain research shows that a chronic pain sufferer’s nervous system can get activated and become permanently on alert, so that everything does feel like agony. The question is epistemological, as all seem to be: how would this pain feel to another person? That’s impossible to know, because pain is not an abstract essence. It is an experience, a process.
My friend might have been exaggerating, but I believe his comment, and his memory of the “me in pain” that I’d shared on Facebook, meant something, despite the fact that it was factually incorrect. Pain is searing and it creates an emotional connection. Expressing pain affects others deeply, creating discrete and uncomfortable memories. One expression of pain, and that is what he remembered. This, too, must be keyed into our species’ survival.
When I thought of this friend and his own online persona, I happened to remember most vividly a few honest posts he’d made about his own troubles. It could be that empathy burns those associations into our brains, and that we vividly remember the strong emotions that are drawn forth by the agony of others.
The question, then, is whether even a few honest statements about our conditions become what people see when they think of us. If we are vulnerable, will people automatically associate our whole beings with those moments when we are at our weakest?
Maybe as a result of this awareness, which began well before his comment, I’d also been consciously checking myself. I felt embarrassed after I posted more than one thing about my health because an administrator at work who is also a Facebook friend said, “You’ve been very honest on social media about your medical issues.” He said the word “very” like I’d done something scandalous and unwise, or as if I were into an odd hobby like sticking goldfish up my nose. Or as if admitting to Rheumatoid Disease was akin to posting a picture of myself doing a kegstand. He’s one of those administrative types that make you feel like you might be in trouble for everything. He kind of has principal voice.
After his comment, I got a little paranoid and decided to post less on social media about my pain, partly out of vanity: I didn’t want to be depressing. I wanted people to see me as someone who had more going on in my life than pain. I wanted to be seen as sexy, lively, cute, funny, and relevant. Smart. A thousand other favorable adjectives to please my ego. So maybe vanity won over honesty, or maybe I was trying to condition myself to focus on more than the pain in my joints.
After I’d made the promise to myself to craft an ideal version of myself, a witty well-read upbeat figment of my imagination, another friend said, “I noticed you haven’t been posting stuff about your health on your page. You must be doing well. I’m so glad.” I wanted to tell her about my continued troubles, about the complicated nature of invisible disability, but I said nothing. We hugged and rushed off in opposite directions in the middle of some event.
I have gone back and forth about what risks I take when I publicly acknowledge on the Internet that I am sick. Or that I am me plus a sickness, or however I might want to describe it to make myself feel better on a particular day. For a while, I thought that sharing would actually protect me, because I figured that the more people knew, the more they’d be required not to discriminate against me. But this is a whole other legal and medical privacy conundrum. I know, ultimately, that the social protection of sharing outweighs any of this, because I stumble slowly into networks who will be truly supportive when the chips are down.
I know that the data I post on social media might be used for specific marketing purposes and is public in a way that might have an impact on me in the future. I can’t be denied insurance for a pre-existing condition under the Affordable Care Act, but new methods of discrimination are always being hatched. Still, this condition is already recorded everywhere in my records, so I’m not safe anyway.
I can’t maintain a cagey fear of anyone finding out about my healthcare issues. Pretending a big part of my life doesn’t exist only makes me feel insane, and ashamed, as if I have done something wrong that I need to hide. I needed people to know what was really going on in my life because the pressure of trying to pretend to be normal was more exhausting than being sick. I needed my coworkers and friends to adjust their expectations of me. I needed them to know what I was up against so that they might understand when I said no. Putting my reality on Facebook was a way to train myself and others to deal with my new normal.
For that reason I have decided to be “out” despite the consequences, but I have to remember that I am able to be vocal about a few conditions in my life due to social privilege. One: I’m a writer, so if someone does discriminate against me on the basis of a health issue, I can put it up on the Internet in a reasonably coherent narrative. Two: I’m an activist, so I would know how to make a stink about it. Three: I’m white, so I have the social privilege to be listened to and believed. Four: I’m a tenured professor with a decent income, so I have the flexibility and time to write, the ability to have a flexible schedule that works around my illness, the support of colleagues, and the ability to be relatively safe from health-related discrimination at work.
Or did I just want sympathy? I admit, at my weakest moments, that I did want that. But I also wanted to benefit other people with these conditions, which is a major motivation for people who post information about illnesses on social media. A recent study found that 94% of patients were willing to share their social data to help patients like them, even if there were privacy risks involved. Hence, the link sharing. And another survey found that 33% of adults use social media to find out about medical conditions and “to track and share symptoms.” For that function, I would sometimes post questions or comments to a series of Facebook and blog comment boards where patients could crowdsource information about new treatments, tests, medications, research, and side effects.
At base, I wanted my friends to understand me, including this new little wrinkle in my life. I wanted to be out as a person with Rheumatoid Disease because being quiet about it added shame and loneliness to a host of other problems, mainly the pain.
It’s hard to know exactly what I want in response. Sympathy helps a little, but it almost directly transforms into my friends’ agony and discomfort, and I don’t want that. Instead, like sharing haircuts or publications or travails about broken cars, I just want them to know and to have known, so that they can form an accurate and honest picture about me and who I really am. That’s intimacy, I suppose, and it seems to break down the wall that anxious sympathy erects.
And it’s true: I do have chronic pain. But I can name your imaginary band in two seconds, and I have a thousand books you should read, and I’ll send you a link to a great news article, and I think your dog is really cute. And I do have a lot more going on than lying on the couch. It’s just that right now … I’m lying on the couch.
SONYA HUBER is the author of two books of creative nonfiction, Opa Nobody (2008) and Cover Me: A Health Insurance Memoir (2010), and a textbook, The Backwards Research Guide for Writers (2011). She teaches at Fairfield University and in Fairfield’s Low-Residency MFA Program.