It’s a conversation everyone with arthritis has had some version of at least a hundred times:
“I have arthritis.”
“Oh, wow, you look fine.”
“I’m not fine.”
“How much time do you have?”
Trying to describe the experience of having a debilitating, chronic, invisible illness to someone who is healthy can be a lesson in frustration. Yet it’s important to help other people, especially friends and family, understand what you’re going through so they know what to say, how to comfort you, and what kind of help you need.
To help you figure out the best way to explain how having arthritis really feels, we asked a group of people with arthritis to share how they’ve talked about their disease. While everyone’s experience will be different, perhaps you can find some inspiration in these analogies. Share them with your friends and family to help them understand what you’re going through.
Also, keep in mind these wise words from Joey T., of Los Angeles, California: “Ultimately, invisible, chronic diseases like most types of arthritis simply cannot be explained to someone who has never been through it. “It may sound harsh but no one gets what you’re going through, not even the doctors.” But your loved ones don’t have to completely understand your pain to help you — sometimes a listening ear is the most powerful kind of understanding.
“Arthritis feels like having the flu”
If you’ve ever had the flu, then you know how entirely horrible it makes you feel, which makes it the perfect comparison for arthritis, says Christina, 32, from Michigan.
“When you have the flu really bad, your whole body is stiff and sore, places you didn’t even know you had are aching, and it takes a lot of effort just to get out of bed much less do anything else. The flu sucks all the energy out of you. Well, that’s how my ankylosing spondylitis feels when it flares up,” she explains. “Except it isn’t just for a week or two, it’s for the rest of my life.”
“Arthritis feels like always having radio static in the background”
“For the longest time I wasn’t ever able to explain how the pain from my arthritis felt to my parents but I recently was able to come up with an analogy,” says Brandy, 19, of New York City, who has juvenile rheumatoid arthritis. “I told them it’s a constant pain that’s always in the background, like static from a radio or TV that’s always on. It never goes away but sometimes it’s easier to ignore than others. When I’m having a rough day and I’m in a lot of pain it’s the worst. It’s a sharp stabbing pain in my knee that won’t go away.”
“Arthritis feels like licking a 9-volt battery”
Did you ever lick a battery or touch an electric fence as a kid and were knocked back by the electric shock that went down your body? Well, arthritis is kind of like that, but worse, says Andrew, 34, of Ontario, Canada. “I tell people it’s like an electric shock that runs right down the nerve but instead of just fading away it bounces back and forth creating a burning electric shock that radiates along a nerve,” he says. “In my case, I’ve been getting shocked for over 10 years thanks to my osteoarthritis.”
“Arthritis feels like living all the time with a sprained ankle”
Not everyone can relate to arthritis but almost everyone knows how painful and disabling a sprain is. “I have had rheumatoid arthritis since the age of 9 and now I am very limited in what I can do physically,” says Colleen, 34, of New York City. “To help others understand my limitations, I say that arthritis flare-ups feel like a sprained ankle — or hand, knee, neck, or whatever is hurting that day.”
But this analogy only goes so far. “One thing I can’t seem to get across to people is the tiredness. It’s more than physical exhaustion — my mind, body, and even soul are so fatigued,” she adds.
“Arthritis makes me feel like I’m a ball of mixed emotions”
Lori, 32, of Raleigh, North Carolina, was just 27 years old when she was diagnosed with osteoarthritis and degenerative disc disease. “I started having low back pain during my pregnancies but it wasn’t until my oldest was six years old that I finally got answers and when I did I was simultaneously happy and upset, which was really hard for those around me to understand,” she says. “I celebrated because it’s hard to fight something that doesn’t have a name and now I could make a plan to fight back but I was also mourning everything that could have or should have been, including all the things my children were going to have to miss because of my disability.”
“Arthritis makes my hands feel like they’re bound and on fire”
If being on fire and yet unable to move to do anything to quench the flames sounds like a living nightmare then you’ve pretty much summed up arthritis, says Brea, 24, of Melbourne, Australia. “I usually describe the pain from my juvenile idiopathic arthritis as sharp hot pain while having my hands wrapped tightly in cotton wool,” she says.
“Arthritis feels like jumping off the top of a jungle gym and landing on concrete”
“You know that deep vibrating feeling, that ache deep in your bones, that you get after you jump off something tall and land really hard on concrete? That’s what I tell people my rheumatoid arthritis feels like,” says Sarah, 35, of Rochester, New York. “Or sometimes it feels like I’ve done three intense full body workouts in a row. People usually seem to get it better if I can relate it to something like that.”
“Arthritis feels like I’m Superman being poisoned by kryptonite”
Feeling healthy is kind of like a superpower. When arthritis flares up it can feel like your nemesis has drained you, leaving you weak and helpless. “The harder part to get across to people is the weakness and mobility issues that come from my osteoarthritis,” says Gideon, 21, of Surrey, British Columbia. “No one really understands what it’s like to actively lose the ability to lift things or write or walk home from the bus stop. It impacts my ability to do even the smallest day-to-day things.”
“Arthritis feels like getting hit in the knees with a baseball bat — by Arnold Schwarzenegger”
Occasional knee pain is pretty common but not all knee pain is created equally. “I tell people that my knees don’t hurt like when you fall over and bump your knee, but they feel as if Arnold Schwarzenegger hit them with a baseball bat every time I take a step,” explains Jack, 50, of Melbourne, Australia. “They hurt every second, every minute of every day. That’s my life, and that’s why I don’t go for a quick walk to get coffee with you in the morning, or walk round the park at lunchtime, or join in the office football team.”
“Arthritis feels like failure”
One of the most painful parts of having arthritis is feeling like you did something to cause all this pain or that you’re not dealing with it “the right way.” So even if someone hasn’t had arthritis, they’ve certainly experienced those complicated feelings of failure, guilt, and helplessness.
“When I first started showing symptoms of rheumatoid arthritis my boss refused to let me take time off. His reasoning was that his former colleague could still work after going for chemotherapy, and arthritis is certainly not as bad as cancer,” says Eileen, who lives in Malaysia. “Sometimes I do wonder if I’m overreacting. I feel I should be able to just tough it out. But at the end of the day, the pain is just too much to ignore, and I feel bad even though it’s not my fault.”