Fine Is Not Fine Chronic Illness

How are you? How are you feeling? How are you doing? These are some of the most common greetings we say to one another, but for people living with chronic illness — especially conditions that are invisible, including arthritis and related musculoskeletal conditions — the answers are far from simple.

For Arthritis Awareness Month this year, we launched a social media-driven project called “Fine Is Not Fine” to highlight the complexities of living with chronic pain conditions. We know how common it is to simply say “I’m Fine”— to a friend, family member, neighbor, stranger, co-worker, or even a health care provider — when the real answer is so much more complicated.

This year, Arthritis Awareness Month in May of 2020 came at a particularly fraught time for our CreakyJoints and Global Healthy Living Foundation patient communities.

After nearly three months of our members feeling especially vulnerable, scared, and isolated during the coronavirus pandemic, and with many now showing up strong to fight against social injustice and racism in America, we know our community is anything but fine.

But even before all of this, our community was not fine. How can you be “fine” when you live with unpredictable health conditions that cause pain, fatigue, and a host of other come-and-go symptoms with which precious few people can sympathize and even fewer can empathize? As Debbie M. simply put it, “Our definition of fine is very different from others.”

Across our social media platforms, this “Fine Is Not Fine” project generated tens of thousands of shares, likes, and comments.

So, why do you say you’re “fine” when you’re really anything but fine? Here is how our community explained it. (And here are some alternative responses to “I’m fine” you could consider saying instead.)

Because People Are Asking as a Courtesy 

“I say I’m ok. Most people just say ‘how are you’ because it comes natural. They really don’t want to know. They probably can’t deal with the idea of the intensity of pain I deal with all the time so I just don’t get into details.” — Joan A.

“It’s not a sincere question most of the time. I often get the same reaction if I say ‘I’m fine’ or say ‘I am struggling.’ People who are close to me can usually tell without me even saying a word. This is a very rough disease. I wouldn’t wish this on anyone.” — Shannyn G.

“When I became so ill — I was bedridden for a decade and loss the use of my hands and legs — I quickly learned it’s mainly a social greeting expression and not an *actual question* where the expected echoing reply is nothing more than “Fine thanks, and you?” — Kristina P.

Because People Don’t Seem Interested

“I say ‘I’m fine’ because most people are genuinely not interested or go into panic mode if I start saying how I really am.” — Savia D.

Because You Can’t Relate Unless You Have Chronic Pain Too

“I say I’m fine because anyone one who isn’t suffering with chronic constant pain can relate and there are no words to adequately describe it. No one wants to hear me complain. It’s easier to make excuses to stay home rather than suffer in silence when I’m around others.” — Carolyn L.

“I will say here [on CreakyJoints] that I am not fine but anywhere else no one can hear it.” — Shawna G.

“It doesn’t help to tell anyone you are hurting. The only person to understand is someone with arthritis.” — Julee A.

Because I Don’t Want to Hear About Your Grandma with Arthritis

“[Fine] means I can’t be bothered to tell people how I actually am as it turns into a ‘oh yeah, my gran had some arthritis.’ They didn’t really want to know in the first place how you really are and satisfies their guilt. It’s just too hard to explain the complexities I live with daily. I am over people asking who don’t give a damn really and eating my small reserves of energy.” — Angela B.

Because People Don’t Want to Hear Negativity

“‘Fine’ means I am doing the best I can. And no one wants to hear negativity all the time.”

— Kelly C.

When I say ‘doing fine’ it means I can feed myself, get up without assistance, walk thru the house. If I say ‘doing good’ means I’m able to drive to do a few errands.” — Veronica W.

Because I Don’t Have the Energy to Say Anything Else

“‘I’m fine’ means ‘I’m dealing with this disease and chronic pain every day by myself and I’m gonna keep the little energy I have left to myself cause even if I try to explain it all to you, you would not understand and I know that you don’t really want to know anyhow.’” — Steeve H.

Because I’d Rather Hear About You

“If I say fine, what is going on in your life is more important to me than my same old same old.”  — Jeanne S.

Because I Don’t Want to Start a ‘Who Has It Worse’ Competition

“I say I’m fine, because I hear others tell me that they know someone who has it worse. How do they know, what is going on inside of my body?” — Brenda K.

Because I Can’t Explain My Pain

“I say this a lot more than I should because I get sick of telling people about my pain. For the most part I will be open about it, but I can never really explain the full extent of it during a flare because there are no words. I often tell my husband that it feels like I have fire inside my body.”

— Tanya G.

Because ‘Fine’ Can Sometimes Be a Good Description

“I think ‘fine’ is a perfectly reasonable response. We are still here, still managing. It’s not good or great and it’s also not crap, struggling, miserable. Sometimes things are just ‘OK.’” — Natasha W.

Because People Don’t Want to Keep Hearing About It

“It’s easier to say you’re fine than endure the eye rolling and ‘not again’ from loved ones and explain that you literally — yes, literally — feel like a truck rolled over you.” — Chrissie T.

 “I find myself saying I’m fine to my loved ones and friends, as I know deep down they don’t want to keep hearing about it. I have rheumatoid arthritis, ankylosing spondylitis, and restless leg syndrome and I find it hard dealing with the pain I’m in. I can’t sleep for more than three hours as the pain wakes me up. Most days I’ll be up around 5:30 AM regardless of what time I go to sleep. I wake up and sit on the side of the bed in pain and think to myself that all I want is to sleep 8 hours without waking up and then I get upset as I can’t remember the last time I had that much sleep. I try not to show how much pain I’m in as my fiancé is sleeping. Then I start wonder why my fiancé is with me, as I’m not going to get any better.” — Marcus B.

“I am slowly phasing into telling folks I’m fine. Until recently I’ve been honest about what’s ailing me or how I feel but it’s getting clearer, day by day, that they don’t care to hear it. So ‘I’m fine or I’m good’ has been the response of late.” — Bethany J.

Because I’m Telling You What You Want to Hear

“‘I’m fine’ means I’m telling you what you want to hear, so you can go off and do what you’re doing and alleviate any feelings of guilt you may have. Because you don’t really want to know.” — Leah D.

Because It’s Just Easier

“It’s easier and I usually say I’m fine or okay. But I think from the grimacing, limping, dropping things, etc. that is part of my daily routine, the people who know and love me know the truth.” — Violet B.

“Some things we just get on with and do not need to share with anyone else.” — Ann L.

Because I Don’t Want Your Pity

“I usually tell people I’m fine because I don’t want anyone feeling sorry for me. I find that intolerable.” — Molly M.

“It’s really pointless trying to explain to anyone how this feels. People don’t really want to know. Some are just being polite, but in general it’s a wasted effort. I’ve had RA since I was 10 years old — I’m 46 now — and I‘ve only had one person actually take a true interest. I always say ‘I’m fine’ because I just don’t want to get into it or have to justify why I feel the way I do or accept someone’s fake pity.” — NH W.

Because It’s a Shield

“It’s amazing what we hide behind the response of ‘I’m fine’ or another phrase. Even some of us who suffer from chronic illnesses aren’t very sympathetic at times. Hence the shield we use: ‘I’m fine.’” — Caryn M.

Because the Truth Is ‘Too Much’ for People

“Our real-life everyday stories are too much for people.” — Leslie M.

“It’s very rare that I ever tell anyone how I’m really feeling. My husband always knew without me saying. There isn’t anyone who truly knows how much I hurt. I just don’t like to talk about it. If you start telling someone how much you hurt, and start listing off your conditions, they get a look on their face as if they will never break free. So, I don’t do that to them, and they don’t have to do that to me.” — Cathy R.

Because I Don’t Want to Talk About It All the Time

“I generally try to make it a less-than-issue and not talk about it all the time. It’s easy to let anything that’s ever-present hijack every thought and conversation.” — Elisa C.

Because I Don’t Want to Complain

“If you offer anything else you come across as whiny or complaining, and people emotionally back off. It does not evoke empathy and understanding.” — Minerva R.

“‘I’m fine’ means I don’t want to tell you everything that really hurts and sound like I’m a constant complainer.” — Kat E.

“I’ve been in pain, in one form or another, for my entire life. I’m 73. No point in whining — people just get sick of it as they’ve heard it all before! They have no idea what you’re actually going through.” — Gail K.

Because I Don’t Want to Burden People

“I don’t like to burden my family with all I feel either. For one there is no way anyone could ever understand or imagine the pain. I’m sure it gets to a point where everyone is like ‘here he goes again, he’s in pain so now he doesn’t want to do anything.’ With all these stupid rheumatoid arthritis commercials, who the hell is going to believe us when on the commercials [people] are building parks, taking pictures of wild horses, etc. Everyone around us is probably thinking, ‘well if the people on TV do that, you’re just lazy and faking it.’ So I just keep it to myself and say ‘I’m fine.’” — Eric G.

“Sometimes it’s not about keeping a happy face. Sometimes it’s just too much to burden another person with, especially if you don’t know them that well. And sometimes you just aren’t up to talking about it. Most often people ask how you are as a ‘courtesy.’ They aren’t actually asking for every detail of your medical history.  And if you start to tell them the truth, it can get to be so involved that it wears you out, plus you have to watch people’s faces as they look on in horror about the things you go through. I don’t want anyone feeling sorry for me.  It’s much too hard for regular people to understand the ‘invisible diseases.’ It’s not their fault. There isn’t enough media coverage about invisible diseases.” — Cathy R.

“I’m seeing my conversations have been revolving around my pain. I have to mindful to speak of something else; it doesn’t seem fair to burden anyone with this pain.” — Laurie F.

Because Everyone Is Fighting Their Own Battles

“Everyone is fighting a battle of some kind. Also being positive will help you feel better.” — Karen W.

“My kids are fairly empathetic, as they know what I deal with. I don’t even bring it up with most of my friends as they are all fighting their own battles. When I’m flaring, I pretty much keep to myself until it passes.” — Kaye J.

“People care, but they are carrying their own stuff. It’s a lot to ask for others to be constantly involved in my struggles. It actually helps me to look outside myself and ask someone else how they are doing — and how can I help them.” — Kelly C.

Because It’s Better to Keep Things Simple

“I’ve learned that people don’t really want any details. ‘I’m fine’ or ‘it’s been a bad week’ seem to be enough.” — Cheryl T.

 Because People Think I’m Faking

“I’ve lost the use of some fingers and toes, lost range of motion in neck and back and some probably think I’m faking. I’m always ‘fine’ when anybody asks.” — Wesley H.

“I try not to look vulnerable. Mostly for my own safety, but a lot of people tend to look at me like I’m faking it. Not anymore, but I used to get ‘you’re too young for arthritis.’ People really do not realize that diseases don’t discriminate between young and old. As people, we don’t search out information about diseases unless it affects us or someone we love. That is just the way things are. I like to watch YouTube to learn about different diseases and conditions. It’s horrible that there is so much pain out there. Understanding is the best thing we can all do for each other.” — Cathy B.

Not Sure What’s Causing Your Pain?

Check out PainSpot, our pain locator tool. Answer a few simple questions about what hurts and discover possible conditions that could be causing it. Start your PainSpot quiz.

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