I’ll never forget the first time I logged onto a rheumatoid arthritis support group on Facebook. The skies opened up and a choir sang the heavenly harmony, “Hallelujah! Hallelujah!” There were posts about flares, methotrexate, disability parking permits and disbelieving mothers-in-law — even tattoo safety! Everyone seemed so supportive and helpful. It was instantly life-changing and life-affirming for me as I navigated my journey with rheumatoid arthritis.
A diagnosis of rheumatoid arthritis (RA), ankylosing spondylitis (AS), psoriatic arthritis (PsA) or other autoimmune type of arthritis is about much more than physical pain. Emotionally, these diseases can make you feel like a misunderstood outcast. That’s why so many of us flock to private support groups on social media — not only to get answers to our pressing medical questions but to “hang out” with the only people in the world who know exactly what we’re going through.
“Having a chronic disease is exhausting and fraught with peril,” says Kate Willard Virant, LCSW, a psychotherapist in St Louis, Missouri and author of the Psychology Today blog Chronically Me: The Emotional Landscape of Chronic Illness. “It’s crucial to have a place to talk about this stuff, like a support group. Make sure you have your people, your tribe, who you can talk to about your feelings.”
That’s why it was somewhat disappointing to realise that, like many things on social media, even arthritis support groups can go a little sideways. We share something major in common, but we come from a million different backgrounds and experiences. While most people and posts are respectful and incredibly helpful, negativity can creep into discussions if we’re not careful. I’m not pointing fingers — I’m guilty of being accidentally judgmental and posting stupid comments sometimes, too.
Let’s all make a pact to be better. We really need each other, so let’s not alienate each other. Here are 10 things we can do today to keep our peer support groups on social media safe and special.
1. Post Body Part Pictures with Caution
“Photos of sores, recent surgical wounds and painful, infectious rashes? Sorry, it grosses me out,” says Diane M, who has psoriatic arthritis. “There, I said it.” It’s a controversial take, for sure, and one that I myself posted about once. I don’t like seeing other people’s feet, whether they have a disease or not. My comment was met with both fury (how dare I make anyone feel “disgusting”) and agreement.
“It takes courage to post pics of your deformed body,” one patient, who has PsA, scolded me. “So if you don’t like it, scroll past. I’m hoping by embarrassing myself I can help others.” On the other hand, “in my defence I just don’t like feet. For some weird reason they freak me out,” said Sandra V, who has RA. “Nothing to do with not being supportive at all. Just my quirk.”
I understand the purpose of posting photos of swollen hands and feet or mysterious bruises and breakouts. People like to compare notes and ask if something is normal or not. It’s valid and extremely important. “I need pictures so that I can see how my hands and feet compare to others with RA. Maybe I too have that rash and need to know what it is,” explains Debra D. RA patient Shehla K adds, “I look at feet and hand pics. It helps me stay on my own regimen and I listen to others’ issues so that I can be aware of the kinds of things I could experience. Just because it’s a peeve to one person, doesn’t mean it isn’t helpful to another.”
It can also save lives. Velvet H (I’m not sure if this is her real name), who has PsA, says that seeing pictures of damaged feet and hands is difficult because it’s scary to see where she may end up with this illness. At the same time, she believes there’s no point in hiding her head in the sand. “I can’t talk about it with ‘normal’ people,” she explains. “When I get to the point where I have deformed feet or hands, I’m going to want validation for that suffering and I want to be here in that way for other people too.”
I think there’s an easy compromise on this one, and it’s not the cliché just “scroll on by.” Some people are very squeamish and that should be respected, too. So how about either putting a heads-up, disclaimer or warning in the first sentence of the post — or even posting the picture in the first comment — so it gives people the choice to not see the image if they don’t want to?
“Just because I don’t like a picture or post, doesn’t mean it shouldn’t be posted,” agrees Carolyn, who has RA. “We are all a bunch of friends with something in common. And our friends on here usually can help in some way. Just wash said area before posting the picture!”
2. Don’t Pretend to be a Doctor — Or Ask Non-Doctors For Medical Advice
“People photograph bumps, rashes and swelling and ask for a diagnosis, only to get 3,200 different answers,” laughs RA patient Roxie H. If you’re not a doctor, physical therapist, personal trainer or nutritionist, you really have no business doling out expert advice on any of these topics.
On the other hand, you should also be careful about what kind of advice you solicit from an online support group. “I hate when people ask for medical advice from patients, not from doctors,” says RA patient Micki B. Like when Jessie R, who has PsA, posts on his page, “My back is sore today,” and someone says, “Pop some ibuprofen and you’ll be fine!”
“Giving unsolicited advice in a forum meant to be supportive is counterproductive,” says Megan S, who has RA. “It is also, frankly, ignorant or naive. Just because something works for you does not mean it will work for others. That is one of the difficulties of this disease. There is so much variation among people with [arthritis] it is hard to research, much less find medications and methods that help each individual patient.”
An overflow of advice, conflicting messages or information that’s downright wrong or not universally appropriate can make fellow arthritis patients feel anxious. “I am just overwhelmed by all the ‘don’t eat this, do eat that.’ I know it is done to be helpful but I am so overwhelmed that I don’t do anything but cry,” says PsA patient Sandy H.
How to help? “Keep the conversation about disability and body variation going,” says Lauren Freedman, host and founder of uninvisiblepod.com and an invisible illness and disability advocate. We all have to strike that balance of offering empathy and sharing our own experience on the one hand and avoiding sharing prescriptive, know-it-all medical advice on the other. Ask yourself how you would feel if someone shared a similar message with you — and think twice about how you frame your comments to others’ posts.
How not to help? “Don’t offer [unsolicited] judgment or advice. Yoga and juicing aren’t for everyone,” says Freedman.
3. Don’t Blame the Victim
“I hate when people assume I’m sick because I’m overweight,” says Melissa H. “Fact is, I gained all the weight when I lost mobility and had to trial a bunch of different meds to figure out how to best manage my ankylosing spondylitis.” “I’ve had just about enough of people telling me my pain is from what I eat or drink!” one group member posted recently.
“Stop telling people to ‘stop playing victim,’” insists RA patient Katt C. “Don’t sit here saying crap about taking charge of your disease. We all try to every damn day. We all battle these diseases and it’s hell for us. When others lecture us about ‘how they need to take charge of their disease,’ it just makes me so mad. It’s bad enough half the world doesn’t even understand our autoimmune disorders and basically laughs in our face like we’re crazy. We have these groups where we can be there for each other and understand and help each other. But you always got those who just gotta make people feel worse.”
Nobody, not even scientists and doctors, knows for sure why we have arthritis and what definitively does or doesn’t cause inflammation and other problems. Let people vent about their pain or their weight issues or anything else and be open to the idea that nobody has any clue about what to do.
4. Avoid Politics
Because we’re constantly at doctors’ offices, we talk about health care a lot. A LOT. Be careful not to get into nasty arguments over vaccines, the NDIS, Medicare funding, or any of those oh-so-fun topics. One thing I think we can all agree on — none of us wants to go broke trying to stay alive.
5. Refrain from Asking Members on Dates
Unless your kink is migraine, IBS, and uncontrollable itching, your arthritis support group is not exactly Tinder. One of Sandra’s biggest pet peeves, especially since she’s married — maybe try reading her “About” section? — is random men in her RA group “asking me out,” she says. “Grrrr! It’s harmless, but really?”
That’s not to say it’s impossible to meet the love of your life in a support group, because you may bond over your shared experience. But there’s an appropriate way to go about it. Asking a complete stranger out just because you have the same disease and think their profile picture is cute is not it.
6. Report Fake Friends
When we seek out an online arthritis support group, many of us are at our most vulnerable. We might be in horrible pain, have problems at work or home or feel lonely or even suicidal. This makes us targets for all sorts of snake oil salespeople hawking multi-level marketing schemes, diet pills, supplements and miracle cures. The ones that sell CBD oil now are rampant in groups where members have chronic pain.
“My social media pet peeve is when people repeatedly try to sell me their pyramid scheme products, insisting they can cure me,” confirms RA patient Lisa Ann R. “I really hate getting friend requests from strangers that apparently know me from the group and I look at their profile page and see that all that’s on it is their ads for their miracle cure,” says Neta M, who has RA. “If someone on here genuinely wants to be my Facebook friend, fine. I have no problem with that but quit trying to sell me some miracle cure.”
Sadly, these swindlers are not always strangers. I personally have had one high school friend repeatedly try to sell me “The Gel,” a homeopathic human growth hormone treatment with a cult-like following. Sheila G had to let go of an acquaintance who kept soliciting essential oils every time she posted about her RA or any health issues. “I told her repeatedly that I already have essential oils that I like and don’t want to buy more. She kept doing it, so I just blocked her.”
7. Stop Sharing Fake News and Passive-Aggressive Memes
Information is power, except when that information is bull cocky. Before you post articles in an online support group, make sure the original source is reputable and the research is from credible scientists. Oh, and that it’s relevant. Amy Howard, who has psoriatic arthritis, will lose her marbles if one more person sends her articles “on this fantastic cure they found for eczema! Ummm, I don’t have eczema for the 9999th time!”
Keep memes light and funny and clever (and apolitical), like the one of Oprah shouting to the rafters, “You get a flare! And you get a flare! Everybody gets a flare!” Kari P, who has ankylosing spondylitis, was especially perturbed to see a cartoon meme depicting a doctor’s office with two lines. One “Pills and Surgery” was a mile long; the other for “Lifestyle Change” was completely empty. She was offended. “I’ve done the natural route, vitamins, chiropractor, etc, and still have to defend my choice to use a biologic.”
8. Quit Medicine Shaming
This is one of the most heated topics in arthritis support groups. Some people hate medicine and would rather exhaust every natural option before swallowing a pill; the other extreme thinks that those who abstain from medication are lunatics. Never the twain shall meet.
“My pet peeve is people who advise others to stop taking the ‘poison’ that doctors prescribe,” says Debra. Brandi S, who has RA, is fed up with online crusades against medication. “‘Omg, you take medicine for your arthritis?’ they write. ‘I go all natural and I have had not a single flare.’ Well, darling, that is so awesome for you and your one joint that has RA. As for me, every single joint in my body is having systemic rheumatoid arthritis and [natural remedies] ain’t gonna cut it.”
Right or wrong, making a health decision about your own body is nobody else’s business. Keep your opinions about arthritis treatment plans to yourself.
9. Respect Privacy
This is a no-brainer but pause and think before reposting or sharing so you don’t accidentally reveal deeply personal medical information about someone else in your group. Always ask permission and double-check before you post anything that involves anyone besides yourself.
“I have some fairly large surgery scars on my knees, ankles and wrists,” says PsA patient Amy F. “I’ve asked friends not to post pics of me if they’re really noticeable. But every damn time, they’ll post an album of pics including ‘Bionic Joints Amy.’ Like, no respect for my insecurities.”
10. Don’t be Judgemental
“If you had a better attitude, you would feel better,” Carla F, an ankylosing spondylitis patient, has heard too many times.
Enough.
Sarah H, who has RA, sums it all up best: “We need to remember that we are here to support and uplift each other. In our daily lives, we feel not listened to and like nobody understands us and our pain, so we come here. To be treated like this? Really? To be given unsolicited diet and exercise advice and told if we don’t follow it we’re doing it to ourselves and that we’re victims.”
“We all know that we lead different lives and while we all have RA, everyone’s pain and other conditions also vary as well as lifestyle. So when we come here for acceptance and understanding because our friends and family don’t get it or the rest of the world shakes their heads at us because we’re ‘not disabled enough’, why are we treating each other like this in a support group? We need to give each other what we need, not what we want everyone to hear. We need to show more compassion and support and stop being so damned judgmental.”
Amen, sister!
This article has been adapted, with permission, from a corresponding article by Dibs Baer on the CreakyJoints US website. Some content may have been changed to suit our Australian audience.
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