Once again, it’s the middle of the night, and I’ve been up obsessively googling a new symptom. Every so often I glance at the head on the pillow next to mine, checking to make sure my partner isn’t waking up from the glow of my phone or the shuffle of elbows on linen.
I look shady as hell, as if I were up to something I ought to be ashamed of. And I am, a little bit. Ashamed that I’ll probably fall asleep this way again, face-first on the little screen — I’m already doing the nod of exhaustion. Ashamed because if my partner wakes up, he’s going to tell me, “You really need to stop doing this.”
The problem is, if I “stop doing this,” I may never get any closer to understanding what’s happening to my body.
I’ve always been the friend who just “gets sick a lot.” That is simply my normal. And when you’re used to living a certain way, enough time passes that you can almost forget that it’s not normal. That is, until something takes a turn for the worse and upsets your whole routine. For me, that was in autumn 2017, when I was 24. Once ignorable joint pains became constant and excruciating; fatigue I’d attributed to overworking swallowed me whole; the aching in my chest became the stabbing, emergency room kind; and the sun felt like a mortal enemy.
Now I am 27, an age at which my body should theoretically be nearing its physical peak and my calendar should be stacked with brunches and shows. Instead I spend most of my time in bed and never commit to plans without the caveat that I’ll probably cancel. My toes always feel broken, and I struggle to bend my swollen fingers at the end of the day. My hips scream out in pain from morning to night, and it often feels as though someone has driven an ice pick into that squishy spot below my kneecaps. My shoulders and wrists are in a constant competition of dull aches and thunderous pops, and even my jaw grates and cracks at the hinge.
“A patient like you walks in and, well, you’re my worst fucking nightmare.”
The situation is complicated, as a respected New York rheumatologist told me last spring: “A patient like you walks in and, well, you’re my worst fucking nightmare.” Some doctors call it lupus while others prefer the longer-winded, less-binding “undifferentiated connective tissue disease.” Almost all the experts I've seen agree that, whatever it is, it’s autoimmune and accompanied by fibromyalgia, a widely-debated disorder that comes with all-over musculoskeletal pain, exhaustion, and a spaciness known as “brain fog.”
That is, unless they write it all off as a consequence of depression, which I didn’t even suffer from at the beginning of this (though that’s a different story now). As my list of medications grows, so does — counterintuitively — my pain. I down no less than 12 pills a day to tame my symptoms, allowing me to keep living at half-capacity. I take the good days, however rare, as they come.
So, while for some people all the WebMD-ing and journal-scouring I do may be problematic — hypochondria exacerbated in a way only the internet can abet — for people with chronic illnesses, especially the invisible kind, the internet is often all you’ve got. It’s where I learned about photosensitivity, and how covering up on a sunny day can be the difference between sleeping the evening away or having enough energy to get through dinner. And how I confirmed, after finding out the hard way, that suicidal thoughts and the feeling of electrical shocks are common after abruptly stopping medications like Cymbalta, an antidepressant prescribed off-label for pain.
I barely have a diagnosis to hold onto, but hey, at least that butterfly-shaped rash splashed across my face seems "normal"… and kind of cute, right?
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Details scraped from social media are crucial to avoiding missteps that might throw me into a weeks-long flare-up, or for prepping my list of concerns ahead of the next doctor visit. And, even more important than that, those documented anecdotes are key to keeping my head on straight after I leave that visit in tears yet again. When progress only comes at the millimeter level, and you’re constantly fighting just to be believed, there’s no choice but to take certain things, like education, into your own hands. Doing so, for many of us, has proven to be life-changing.
“Eighty percent of my knowledge around endometriosis, which I consider one of my main issues, has come from the chronic pain community that I’ve found within social media,” says Lara Parker, a 28-year-old Los Angeles-based deputy director at BuzzFeed who shares the ups and downs of life with a chronic illness with nearly 49,000 Instagram followers.
Parker says that social media, primarily Instagram and Facebook groups, have taught her more than most doctors. “I learned what kind of treatment I needed," she says. "I learned what endometriosis even was — and this was after I had already had a surgery from a doctor who was supposed to be an expert. I’ve learned about different medications. I’ve learned what symptoms are correlated and that it’s not crazy of me to feel leg pain even though I have what is primarily considered something that affects your ‘female parts.’
“I think about what my health journey would look like if I didn't have these people on the internet who are going through the same thing as me, educating me,” she continues. “It’s scary to think about where some of us would be if we didn't have each other’s backs, because we can’t rely on doctors.”
That’s not to say you should shirk the doctor’s advice and attempt to diagnose and treat yourself solely based on what you read online. Seriously, do not do that. But for conditions that are “a bit too complex” to be summed up in a pamphlet — as I was told by one doctor when I asked for reading material — the knowledge gleaned on the internet feels as essential as all the bloodwork and checkups.
It was during a late-night visit to Reddit that I first came across what felt like my thoughts outside of my own head — right there, written in plain text and upvoted by dozens of people. I meet almost all of the symptomatic criteria but my doctor says my bloodwork is fine. My partner is getting frustrated with me because I am too exhausted and in pain to do anything. My family won’t stop hounding me about all of the medication I’m on. If one more person tells me to try yoga I’m going to snap. I feel so alone.
“Online I don’t have to appear better, healthier than I am. I don’t have to look tough.”
The further I went, the more I found that camaraderie, not only in subreddits, but in online forums, Instagram comments sections, Facebook groups, and Twitter. So many people in pain, fighting an invisible foe and, somehow, also helping to fight each other’s. I’ve racked up nearly three decades’ worth of physical exams, needle probings, hospitalizations, X-rays, MRIs, and “let’s try this and hope it sticks” treatments, but to this day, strangers on the internet remain my best defense.
“That online community is the next best thing to getting together [IRL] with a whole lot of ‘lupies,’” says Iris Carden, a 53-year-old Australian former journalist and retired Uniting Church minister who has been blogging about her lupus experiences since 2011. “There is suddenly this sense of, ‘I can relax now, everyone here gets it.’ I don’t have to appear better, healthier than I am. I don’t have to look tough.
“I can just let my guard down — I can totally relax, and be myself here,” she says of our corner of the internet. “Everyone’s going through the same thing, and I’ve found a lot of value in that.”
Carden’s blog, Sometimes, It Is Lupus, is shared on just about every lupus blog roundup, and for good reason. It’s not just a hub of support, though it is undoubtedly that; it’s a place where people fumbling through the early days of a diagnosis can turn for thoughtful guidance. It’s where you might be alerted to important pharmaceutical changes or research and clinical trials. It’s also a place where you can check your symptoms against another person’s to see how worried (or relieved) you should be, and breathe a bit easier knowing someone else knows what this is like.
“Patients and caregivers have a reservoir of insight, of data — collected wisdom that can be used for good outcomes, better medicine, a better healthcare system,” says John Novack, who leads communications for Inspire, a healthcare social network. “It’s not just all the ‘experts’ out there. All the wisdom doesn’t live with them.”
You just aren’t going to find “hacked solutions“ to everyday problems through, say, the Mayo Clinic.
By hitting a few buttons, you can connect with people on the other side of the world who may already have been through what you’re now scrambling to figure out, Novack explains. People living with chronic conditions and those who support them daily “are hacking solutions” to everyday problems, he says, and you just aren’t going to find those workarounds through, say, the Mayo Clinic.
Take the current global health crisis, the novel coronavirus, for example. Tips on dealing with the pandemic could come, Novack says, “from someone who has to travel at this time, has to take their immunosuppressed kid to an appointment that they cannot do virtually.” Where else do you get this information, but from the people who have done it themselves? “It’s a matter of adding to the conversation, adding to the body of knowledge,” Novack says. When it comes to managing a chronic condition, he adds, “It’s not, ‘The answer is...’”
Social media, Reddit in particular, is how many of us with lupus and lupus-adjacent conditions found out that one of our most commonly prescribed and irreplaceable daily medications, Plaquenil (hydroxychloroquine), was being investigated as a possible treatment for COVID-19 — well before President Trump ill-advisedly blasted it out on social media as a miracle cure. It was first an unproven glimmer of hope, and now, a point of constant worry. Patients are already being told to halve or ration their medication, and some say they’ve been denied refills due to shortages. Without hydroxychloroquine, the immune system of a person like me will ramp up its attacks against the body that houses it.
Sometimes I chime in online with a comment or a message, but often I just lurk, as I imagine most people do — taking in words that could very well be our own but aren’t and groaning together over the same tired placating statements (“Just give it more time, these treatments take months to kick in”). We have each other’s backs, whether that be by voicing our understanding or simply by showing up. “The venting, the sharing of the burden, the friendship that it turns into, the old ‘Welcome to the club that no one wants to join,’” Novack says. “That feeling that they’re part of something — for those who get it — it runs deep.”
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Illness isn’t always easy to look at head-on; in fact, it usually isn’t. More often than not, it’s gross, it’s uncomfortable, it makes people want to squirm away and talk about something — anything — else. But chronic pain and the multitude of conditions that cause it affected an estimated 50 million people in the U.S. as of 2018. Twenty million of those people were in severe enough pain that it interfered with day-to-day life. If we just keep smiling through it, our “normal” will only continue to feel anything but. That’s where unwellness Instagram comes in.
“I get on my Instagram Story and I say my vagina is throbbing, and I say I’m having a really bad endometriosis flare and I can’t get out of bed, I’m super-depressed — I want those things to be more normalized so that people with chronic pain don’t feel like the only place where they can get support is in these [online] groups,” Parker says.
It’s not always easy; illness or not, the internet is the internet, and hateful people always have a way of rearing their heads.
“A lot of chronic illnesses can be very isolating because you’re just sort of feeling like you're on a desolate island.”
“There are times where I’ll get a comment from someone that’s like, ‘You attention-seeking whore,’” Parker says, “or I’ll get a comment about my illness that I’m doing something wrong, or that I’m spreading the wrong message. But if you don’t do it — what if other people aren’t able to?” That question can be hard to ignore, especially thinking back to those “desperate” teenage and early-twenties years, “and how alone I felt and how lost I felt,” she says. “A lot of chronic illnesses can be very isolating because you're just sort of feeling like you're on a desolate island.”
Parker, who is working on a book about living with painful pelvic floor conditions, still insists she’s had a mostly positive experience online. Chronic pain social media has connected her with some friends that she can consider “closer than family” despite never having met them in person.
“I would die for them,” Parker says of her friends Brooke and Caroline, both of whom she met via Instagram. “They are the people that I go to, and they are the people I would say understand me more than the people that I actually see day-to-day and hang out with.” Parker’s mom even kept Brooke and Caroline in the loop, “constantly texting them,” when Parker underwent surgery back in January.
Those connections, even the ones that never morph into friendships outside the forums, are something chronic pain sufferers don’t take for granted. Because at the end of the day, after you’ve complained yet again to your family, your partner, your most well-meaning and supportive but healthy friend, it really is a lonely little island.
“Of course I don’t want anyone else to live with this pain and this illness, but I’ll tell you what, I’m so fucking thankful that they do because I don’t know what I would do if there weren’t other people going through this experience with me,” Parker says. “Every time I share something and someone relates to it, it just feels good. And that sounds terrible to say, but it’s affirming. It’s validating in a way that I haven’t been validated by other things in my life, doctors especially.
“At least we have each other, because we don’t really have anyone on our side.”
“It’s sort of like, ‘I’m not imagining my pain, I’m not crazy. I’m in this, and other people have it too,’” she says. “And that sucks, but at least we have each other, because we don't really have anyone on our side. At least, that's what it feels like.”
Over the last few weeks, though, the tides have shifted in a way none of us could have anticipated. The world is on lockdown as cities enforce stay-at-home orders in desperate attempts to contain COVID-19. It’s upended life as we know it, and there’s no telling how long that gnawing paranoia of infection will keep us all apart even after the outbreaks subside. So families keep their distance, friends hang out on conferencing apps, and no one feels quite up for a trip to the grocery store.
It is forced solitude like modern society has never quite experienced before. Except, of course, for those of us who are already so used to living this way. Being alone is woven right into our norm; it was there before the pandemic, and it will be there when the world starts moving again.
That’s the sentiment on chronic illness social media these days, the punchline of so many memes. Our routines haven't really been disrupted. Social isolation? My crew could tell you a thing or two about that.