Being diagnosed with rheumatoid arthritis automatically inducts you into a special club. Not the fun kind of club where everyone’s pounding shots and doing The Floss — but a club nonetheless. When you have a debilitating chronic illness like RA, “it’s easy to feel isolated,” says Katie Willard Virant, LCSW, a psychotherapist in St. Louis, Missouri who treats many patients with chronic illness and is the author of the Psychology Today blog Chronically Me: The Emotional Landscape of Chronic Illness. Feeling like you belong somewhere, anywhere, with like-minded people is very helpful to get through the roughest days with an inflammatory arthritis like RA. Even just sharing a laugh or venting about the shared experience can be therapeutic.
We all hopefully have some supportive family and friends to lean on, but unless they also have RA, they really don’t understand what we go through on a daily basis. I asked my pals from an RA support group for the things nobody can truly understand unless they have RA (or anther chronic inflammatory illness) and the responses — funny, bittersweet, empowering, and maddening — came pouring in.
1. Every day is a crapshoot
We wake up in the morning and … surprise! On the best days, we feel pain free for the first time in months. On the worst days, we have an agonizing flare. “It’s the unpredictability,” says Susan P. “One day you are feel fairly good, the next day you feel like you were hit by a Mac truck. Many times, we can’t really understand what happened.”
The pain we experience is intense and can be constant from the moment we step out of bed in the morning and put our aching feet on the floor. It’s a pu pu platter of agony: deep unrelenting throbs, sharp jabs, radiating burning, pins and needles, dull aches. We get it all. It’s not fun. “It’s just something no one can understand,” Susan S. says. “You have to experience the suffering.”
2. We’re amateur meteorologists
“I’m a weather radar,” brags JT H. “No joke. I know all over my body when it’s about to rain.” Oh, we’ll tell you when it’s gonna rain alright. Because just before it does, a lot of us with RA know it’s coming — we can literally feel it in our bones. “It’s been 90 percent humidity and I’m swollen like an old wooden door,” says Deborah B. (Read more about how the weather may affect your arthritis.)
“I was shocked to learn not everyone feels the barometer pressure changes,” laughs AuraLee N.
By the way, doesn’t matter if it’s 120 degrees outside, “even in the summer, a heating pad feels heavenly!” says Vicki C.
3. We aren’t just tired, we are bone-tired
The fatigue we experience from dealing with constant pain and medication side effects is very real. “There’s a big difference between feeling tired/sleepy and pure exhaustion/fatigue,” notes Amy H. “Many people think tired/sleepy and exhausted/fatigued are synonymous, but when you have RA, you know exhausted/fatigued are on a whole different level.”
Heather D. read an article once that said that for a “normal person” to understand our chronic fatigue they would have to stay up three days straight and try to still function normally. “Nobody knows the effort everything takes,” explains Kelli T. “Getting out of bed, showering, getting dressed. RA zaps our energy and then it takes so much more energy to do what we used to think of as simple things. A cup of coffee used to wake me up but a gallon of coffee doesn’t help some days.”
4. Therefore, for many RA peeps, naps are a lifestyle
“I have a great love of naps,” Susie S. admits. We crave them, we need them, they restore our energy (sometimes).
We’re really good at them, too. “I could sleep standing up,” brags Alice C.
“As I write this, I am contemplating taking a nap,” says Sky K.
5. We’ve found creative ways to wipe our butts
We’re immobile, what can we say? Actually, enough said.
6. We apologize for our resting bitch face
“I’m not cranky,” insists Karen J. “I appear to be cranky but I’m just conserving energy. When I’m in pain it uses up so much energy that I don’t want to waste any on social niceties. Even regulating my tone when I’m speaking is something I can’t be bothered with sometimes. Makes me appear bitchy.” (Read one patient’s take on the many moods of rheumatoid arthritis.)
“I have severe anxiety when people come up to shake my hand or give me a hug,” Sandra M. admits. “I don’t want to be rude but I’m afraid of the ones that don’t know my illness too well, and don’t think twice about a big hug or a rough hand shake.”
7. We have the strength of a mouse
There are those days, says Jason S., “when someone yells ‘high five!’ but you can only raise your arm enough for a low five.” Our pain causes weakness in the most preposterous ways. Jars are our nemesis. “A cotton bed sheet can be too heavy to lift, a full-size towel too heavy to use, a ceramic coffee mug too heavy to drink from,” says Cathy D. (These assistive devices can help with everyday tasks.)
Adds Ruth L., “I couldn’t open my car door this afternoon with one hand. Had to use both hands and with great effort.” Due to dexterity issues, Karen B. has to get fat hairbrushes and toothbrushes with big handles, “like what toddlers get.”
8. We’ve mastered the Frankenstein Shuffle
“I used to walk three to four miles with my husband,” says Millie R. “Now, I try walking to the car, and that’s a chore.” When the joints in our knees, feet, and ankles flare up, we walk funny (if we can walk at all). “I hate the feeling like I can barely put one foot in front of the other,” says Felicia A.
Some may prefer to call this gait the “Tin Man” or “The Penguin,” I personally look more like Frankenstein’s monster stiffly lumbering around moaning “Mnhhhhh Mnnnhhhhh.” I’m slightly more attractive though.
“You know when you’ve walked for like a mile in the sun or cold or maybe at a hike or a day trip thing?” Deborah asks. “But you hit the wall before you got back to the car? It was farther than you thought and the car is in sight, and you’re walking, thirsty, carrying bags, or have to pee or worse, and that last 200 feet may as well be a mile? I’ve felt like that since I got up this morning.”
9. We’re not showing up, sorry
If we say we are, we will probably cancel. If we actually show up, well, we’re leaving early.
Social commitments with RA are tricky. Our energy levels are constantly in flux. We might RSVP yes but the reality is that showing up to stuff is strictly a game-time decision. So we deal with a lot of social isolation. “I’m always afraid to make plans,” says Lise L. “Fear of the flare. That fear has impacted my life more than anything.”
“I want to be included and be social but pain, anxiety, and depression gets the best of me,” laments Melissa S. If we do show up, don’t be surprised if we ghost early. “That feeling when you’re out at a party or get together and the fatigue hits you like a ton of bricks,” says Connie T., “then everyone you say goodbye to says, ‘You’re leaving already? It’s so early!’” Buh bye.
“I was going to mention something,” says Dwayne K., “but forgot what…oh yeah! Brain fog!”
11. We’re embarrassed
Some of us are very self-conscious of our mangled hands and feet, the bruises, our blotchy skin. Some of us are mortified that we look way older than our years. “I was just diagnosed last year at the age of 31,” says Erin T. “I know there are many people diagnosed before that age, but I really felt too young to have something like RA. So I think only people with RA can understand the embarrassment of being 31 and having a body that feels like it is 80-something. It’s embarrassing to not be able to open things or turn doorknobs or reach to scratch your back, or have trouble tying shoes or getting dressed.”
12. We want our old selves back
“I used to be a very good pianist,” Gretchen E. says. “Playing the piano was the way I expressed my feelings. Not being able to do that any more leaves a big hole in my life. I still sing but it’s not the same, though it’s a healthy activity.”
Our pain has forced us to stop doing the things we love. “I used to love fishing camping and taking road trips,” says Diana G. “I miss all of that.”
The good news is that sometimes RA forces us to find new hobbies and interests and has taken our lives in new directions we never anticipated (see figuring out creative ways to wipe our butts above).
It’s also forced us to slow down, which is not necessarily a bad thing in this hectic fast-paced age. “Bad days being tired and sore means down time with my kids, whether it’s napping or cuddles with my kids,” notes Casey Van Houdt. “Yes it still can be painful but I get to hold my boys.”
We can end up very well-rounded but we do mourn our old lives. “I could be fine one day then the next it all hits me and I have a horrible sadness that comes over me,” admits Jessica C. “Missing my life before RA. It’s like mourning someone who I will never get back. I miss my old self. The one that could jump out of bed. The one that didn’t have to map out a trip based on meds and how many hours I can stand being up and out. I can’t just live free anymore. It’s hard.”
“My head is like, ‘You can do that,’ but my body disagrees,” says Rhonda RC. “Sometimes I just feel so defeated I can’t do what I used to.”
13. We are warriors
We fight the feeling of gloom. We are very scared of the future. Yes, any of us could get hit by a bus tomorrow, but with RA, there is a constant nagging fear of wondering if and when our bodies will finally fail us. With all of the pain and meds, how long can we make it in this lifetime? When will we end up in a wheelchair and not be able to take care of ourselves? “There is a constant fear of to what extent my body will change,” says Erin. “What if my fingers deform so I can’t write anymore, what if I need a knee replacement or some other surgery? I have a constant daily fear of how RA will change me in the future.”
It’s cliché but true — a lot of us take nothing for granted and are grateful to be alive. “An RA person develops a new normal, meaning we adapt to our everyday pain,” adds Suzanne H. There are times we are tired of fighting and just want to give up. We make ourselves push forward — for our families and for ourselves. Insists Janice O., “people without RA don’t know how strong and courageous we really are.”