manin sits on edge of bed and looks down

Arthritis, the leading cause of disability in America, is a degenerative and inflammatory disease that affects the joints. It has several types, the most severe of which can be deadly. While the cause of arthritis is still not fully understood, approximately 50 million Americans live with a form of the condition — equivalent to 1 in 5 people.

Despite that number, a lot of misconceptions exist around arthritis, even among friends and loved ones of people living with it. We partnered with The Arthritis National Research Foundation to raise awareness surrounding this complex disease. We asked readers: What are some things you wish others understood about living with arthritis?

This is what they had to say:

1. “The pain can cause depression. At night it hurts so bad, I don’t want to wake up the next morning.” — Marielle White

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2. “We are not faking it. It’s real, and it hurts.” — Annie Seifert

3. “It’s not our fault! People living with arthritis are often blamed.” — Donna Henry Bisogno

4. “It affects many children. Often I hear how young I am to have rheumatoid arthritis (I’m 34). When I tell people I was diagnosed at age 2, they can’t believe it. I wish people understood it’s not arthritis that comes with old age. RA is a disease that mistakes my joints as invaders and sends my immune system into attack mode.” — Jennifer Brennan Leach

5. “RA /autoimmune patients are the best actors out there. We push through every day despite how we feel.” — Sonya Enslow Caudie

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6. “Every day can be different.” — Marcy Wysocki

7. “Some of us get sick easily. The medications we take to keep our disease in check lowers our immune system. That means the slight cold you have will probably turn into bronchitis or pneumonia if I catch it. We can’t fight off infections like healthy people.” Stacey Howe

8. “I feel sad and lonely about missing out.” — Julie Max

9. “We might look ‘normal.’ But the pain is sometimes so unbearable all over our bodies that it feels like broken bones, muscles and ligaments.” — Melanie Mulliken

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10. “We aren’t lazy. We are just trying to thrive.” — Lori Rodriguez

11. “My illness is serious, but it doesn’t mean I’m checked out on life. I still want a dream career, to travel the world and do the impossible.” — Valerie Webster

12. “I don’t want to be ‘the sick girl,’ but it’s impossible not to have RA permeate every aspect of my life because it’s always there in the pain and fatigue.” — Rene Baloge

13. “I’m not super woman just because I don’t look sick on the outside!” — Mandy Dawkins

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14. “It is not the same pain everyone is always using for comparison. Before my diagnosis I’d never experienced pain like the pain from this disease. It is pain that nobody can possibly fathom until they feel it personally.” — Jeanie Parker

15. “I can feel OK one day and be sick/fatigued/in pain the next. Living with this illness that has no schedule and a mind of its own isn’t easy to plan my life around.” — Candi Wilson

16. “Even after 10 hours of sleep, my body may feel as though I have just ran 5 miles, have the flu and have just been in a car wreck, all at once!” — Lynn Harrison

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17. “I do not fake my disease. Some days I am fine… some days I kick my own ass.” — Brandy Abernethy

18. “It’s unpredictable. I’m constantly making plans and then having to cancel because my body is not cooperating. Constantly living with pain and/or extreme fatigue can break your spirit and make you want to disconnect from the world.” — Julier Ober Stebbens

19. “My disease is not the same thing as osteoarthritis. No, your ‘grandma’s knee problems’ are not the same thing as my systemic, debilitating, lifelong disease.” — Katie Jo Ramsey

20. “Read, learn and appreciate the Spoon Theory — that’s the best way to explain the battle.” — Crystal Sumner

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What are some things you wish others understood about living with arthritis? Let us know in the comments.

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My path towards ankle osteoarthritis (OA) began while I was playing collegiate basketball. Over the course of those few years, I was always spraining my ankle, sometimes very severely, and never taking the time to properly care for it. I was 21 years old and figured I wouldn’t have to worry about any ramifications until I was 50 or 60. But all the damage sustained over that short period of time led to early onset osteoarthritis in my right ankle at age 28. Until that point, I had lived an active life. I enjoyed playing basketball, golfing and just generally being on the move. That all changed rather quickly and 30 years too early.

Frustrated, scared and confused doesn’t even begin to describe how I felt.

During the first few years after my diagnosis I think I tried just about every “treatment” or “cure” I came across. I was, and still am, pretty stubborn, so I believed I could find a way to beat osteoarthritis. After all those cures failed to deliver on their promises, only then did I come to accept that I needed to learn how to manage osteoarthritis so I could live an active life.

Now 10 years later, at the age of 38, I’m still learning how to properly manage my OA. While I’ve made some mistakes, I’ve learned a lot. I’m still able to live an active life, but I’ve learned how to better manage my expectations.

To help manage my OA, there are six pillars I’ve learned lean on over the years. It’s these six pillars that have allowed me to grow and thrive even with my ankle OA.

1. Develop a support system. Both my family and friends have proven to be reliable support systems. Talking with them and even educating them about my osteoarthritis if needed has helped me better weather the ups and downs I experience.

2. Knowledge is power. Right after I was diagnosed, I wanted to learn as much as I could about my condition. I spent a lot of time reading about the experiences of other OA sufferers. I also read scientific articles and research to gain a firm grasp of the treatments that actually work and the clinical trials testing potential cures. All that content helped me to be better prepared to proactively manage OA, talk with my doctors about how ankle OA will affect me moving forward, and help others suffering from the same condition.

3. Own it. There are days when my osteoarthritis keeps me from doing much of anything. But on a day-in-day-out basis, I want to do what I can to ensure I’m living a life that allows me control my osteoarthritis as best I can. I pay special attention to my diet, exercise and physical therapy, and mental focus so I don’t get caught up in the mental rollercoaster that OA can sometimes create.

4. Better communication. I learned quickly that saying “My ankle hurts” doesn’t do an adequate job getting the message across about how I’m really feeling. Instead, being as specific as possible saves a lot of needless back-and-forth and frustrating communication. Here’s an example of what’s worked well for me: “Because my ankle is swollen and has limited movement, walking or even standing too much today is going to be uncomfortable. I’d prefer to rest and save my energy for another activity.” 

5. Coping mechanisms. Dealing with osteoarthritis can make me frustrated, impatient and grumpy. Those feelings get in the way of owning my condition, as I mentioned above. Learning various coping mechanisms, like meditation, provides a pathway to becoming better mentally equipped at managing my osteoarthritis.

6. Life balance. I still like to be active by backpacking and fishing or walking my dog. But now I have more realistic expectations about what I can do and for how long. I’m getting better at balancing my activity-filled days with ones where I sit on the couch all day.

My battle with osteoarthritis is now 10 years old, but I’m still learning how to best manage it while trying to live the type of life I want to live. It’s a delicate balance. Thankfully, I feel those six pillars have been hugely beneficial at allowing me to proactively manage my OA instead of it managing me. I still have a long way to go, but I’m confident I’ll still be able to thrive!

man sitting on rock with mountain view behind him
Ryan on a hike.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Naomi, the author, and four of her friends in their school gym
Naomi and her friends.

I don’t think I’ll ever truly understand my arthritis. But just because I won’t, doesn’t mean we can’t try together.

1)  Thanks for trying to learn, with or without me, about my disease.

It’s hard being the only one of us with juvenile arthritis (JA), but knowing you guys put effort into learning what I’m going through makes me feel less alone.

2)  Thanks for asking how my doctors’ appointments go.      

Whether it’s physiotherapy, occupational therapy, rheumatologist appointments, MRIs or even just good ol’ checkups, I can always count on you guys to ask how they went, whether there were any updates, and if there’s any good or bad news.

3)  Thanks for giving me the confidence to share my story.    

When I’m worried what people will think or scared that I’ll be looked at differently, you let me know I have nothing to worry about and I should be proud no matter what.

 4)  Thanks for explaining it to other people when I’ve been asked multiple times already that day — you might even get better at explaining it than I am!

I’m proud to say you guys have mastered explaining what JA is in simple terms.

5)  Thanks for reminding me to take my meds on those forgetful days and trying to pronounce/remember their names.

As many medications as I have to take, there are as many days I forget to take them. I don’t know what I’d do if it weren’t for you all being the little ribbon around my fingers reminding me to do so.

6) 
Thanks for recognizing when I’m having a bad day and knowing just how to make me feel better.                                  

When I’m struggling to put my jacket on, tie my shoelaces, chew my food, open a door, carry a backpack and walk, you never fail to make me laugh (uncontrollably sometimes), say something positive, or remind me how lucky I am.

7) 
Thanks for walking with me, no matter the speed, and stopping when I need breaks.                                                      

I can be slow sometimes, but as long as we’re slow together does it really matter?

8)  Thanks for getting excited with me when I’m having a good day!

No one really knows how huge and few those days are for me except for you guys, and there’s no one I‘d rather share them with.

9) 
Thanks for challenging me while still knowing my limits (pretty much not letting me become a couch potato).

On those good days, and even some not so good, you push me to move, within my possible range of motion, so I can still feel normal.

10)  But most importantly, thank you for being the most amazing support system one could ask for.

I never in a million years imagined I would be as lucky as I am right now to have you all there for me — no matter when, where and why. You have made me laugh at the best times, and have sat and listened to me at the hardest. I don’t know if you realize the important role you played and are still playing in my experience with juvenile arthritis, but I hope this helps you recognize the impact you’ve had on me.

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


I’m pretty lucky when I think about my situation. I’ve never had a flare-up so bad I’ve had to go to the hospital. I can go away to school without much fear or worry. I can (for the most part) be a “normal” teenager. But juvenile idiopathic arthritis (JIA) is still a huge part of me.

At 15 years old, I started limping. I’ve since learned, at 18, that limping may be a first sign of JIA. If only we’d known that back then, maybe I could’ve avoided three confusing diagnoses. Maybe I would’ve been able to control the pain. Maybe I would’ve been able to increase my range of motion in my arms, leg and jaw. Maybe seems to be an overused word in my vocabulary since my diagnosis.

Medications have worked their way into my life as well. Celebrex, methotrexate, biologics and folic acid, words that once seemed like gibberish, are common in a sentence for me nowadays. But it’s not the medications I really pay attention to, more the side effects. In my experience, there’s often a sentence of the information sheets of the medications that’s similar to this: Remember, if your doctor has prescribed you this, the benefits most likely outweigh the side effects. That sentence is the reason I am not fully living like a “normal” teenager. Other teenagers might worry about how they did on a test, or if they’ll make a team. And though I have those worries, I also have to worry about if my hair will thin out, if I’ll be too drained or nauseous to do something, as well as other things.

It took time, but I have finally come to accept this disease — to accept that yes, I have JIA as a disease, and no, it will never fully go away, but I can choose to survive with it or let it take over. I, along with 24,000 other children and teenagers in Canada, will, and have to, take control of our bodies back. This is what we have to work with, and this is what we will work with.

Naomi on a merry-go-round

Editor’s note: This post is based on an individual’s experience and should not be taken as medical advice. Please reach out to a medical professional with any questions or concerns you might have. 

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Because I blog about living with a chronic illness, earlier this year I was asked to be an ambassador for our local Walk to Fight Arthritis in St. John’s, Newfoundland & Labrador. As an ambassador, I spent a lot of time preparing for television and radio interviews to talk about how arthritis affects people and how important it is to support research and community initiatives to help Canadians who live in pain. A big part of my preparation was trying to find the right way to answer a very popular question: How does arthritis affect our daily life? I get asked that question more than any other, and I think it is because even though people want to understand, they ultimately have trouble relating to what we go through. Because it is such an important question, I always wanted to be able to answer it eloquently and definitively. But the fact is, there’s just no way to know what a day will be like when you have a chronic illness.

I think the hardest part of having a chronic illness is the unpredictability of it all. Doctors will tell you to take it one day at a time, but sometimes even that is nothing more than a comforting cliche. Some people can’t take it much more than one hour at a time, because their body is in a constant flux.

During my time as ambassador for the walk, I actually ended up missing out on a lot of the interviews scheduled for me, leaving my co-ambassador to do most of the work. And that was because of the unpredictability of living with a chronic illness. When I signed up to be an ambassador, I felt strong, energetic and determined. I couldn’t wait to do those interviews and have a part in reminding people that arthritis isn’t just an “old person’s disease.” And when I signed up I had no reason to believe I wouldn’t be able to attend some of those interviews. I had no way to predict that I would be in and out of the hospital and off from work.

But that’s what a chronic illness like arthritis can do to you. It not only causes painful symptoms, but it can destroy any sort of routine you have. It essentially turns your daily life upside-down. It can affect every aspect of your life in ways you probably don’t even know yet, because each day can bring new surprises.

I did what I could from home to promote the walk while I tried to recover from a lupus flare-up. Lupus is an autoimmune disease that can cause symptoms like joint and muscle pain, photosensitivity, fatigue and organ problems. Having been diagnosed only recently, I know it will take me a long time to fully understand how my symptoms will be triggered. Once I have a better understanding of my triggers, I will have a better chance at controlling my lupus, but even that won’t be a guarantee. Something new can always become a trigger. Even when I’m having a flare-up, I can experience 10 different symptoms at 10 different times. They may remain steady throughout my flare-up, or they may come and go as they please.

There is no guide book for chronic illnesses. No two people have the same experience, even if they have the exact same disease. No one can warn me when a bad day is coming, or what that bad day might look like for me. Imagine how difficult a concept that is to grasp when you’re in your 20s and trying to build a career and maintain a healthy social life.

Chronic illness gets in the way. That’s the easiest way I can explain it. You make life plans, just like everyone else, and then chronic illness comes along and decides to change those plans. It doesn’t always change them profoundly. Sometimes it’s just one little modification at a time: a missed interview, having to sell a concert ticket two hours before a show, a short absence from work or having to watch your friends go on an afternoon hike without you. And sometimes it’s a giant concrete road block dropped right in the middle of your path: a lost job, a cane, an inability to pursue your dreams of being a musician.

Every single person with a chronic illness has a different story to tell. But each story has a common thread: an unreliable narrator and an unexpected plot twist. We honestly have no clue what tomorrow will bring for us. We can make plans because we still have the same good intentions we possessed before we got sick, but we can’t promise our bodies won’t have a different plan for us. Tomorrow we might be able to go for that walk or spend eight hours working, or we could very well be at the hospital hooked up to an IV. Your guess is as good as ours. And that’s why I wanted to become an ambassador for The Walk to Fight Arthritis to begin with, because I think it’s important for all our stories to be heard.

I managed to muster up the energy to attend the walk, and I stood in front of a gymnasium full of people with arthritis and supporters to give a speech about the importance of raising awareness. I put a face and a name on a disease that maybe not many people knew about before, and I gave a real-life example of how the unpredictability of my disease can wreak havoc on my life plans.

I hope that with the help of our local organizations like The Arthritis Society, more people will come forward to tell their stories to the masses. And if we keep educating people about our illness, maybe in the near future we won’t have to keep reminding people that our diseases are real — no matter what age we are — and that the effects can be truly devastating when we don’t have the support and understanding of our community.

woman on stage giving a speech
Lisa giving her speech.

Follow this journey on Damsel in a Dress.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


A news reporter asked me on air, “What is arthritis to you?”

Silence. I fought to get the words out, and I struggled to come up with an answer to such a blunt question. All I managed to say was, “It’s my life…” We sat there in silence for 30 seconds as he waited for me to give a more thorough answer.

…But I had nothing else to say. Ever since then I’ve been grappling with the question, “What is arthritis to me?”

Juvenile: because I was a child. Idiopathic: because no one could tell my parents why. Arthritis: because I was a child in what many people associate with a “senior’s” body, because my body was self-destructing.

When I was 4 years old, arthritis meant yelling for my parents from my bed because I couldn’t walk. It meant my dad had to help me walk like I was a toddler. It meant swollen joints and a pain I can still remember to this day. When I was 4 years old, arthritis was a word I didn’t know. It meant physiotherapy and pain management therapy. It meant not being able to sit cross-legged on the floor with the other kids. It meant poking and prodding and dozens of doctors circling the room. When I was 4, arthritis was a hospital bed.

When I was 10 years old, arthritis meant being teased at school because I was allowed a chair in the school assemblies. It meant buying Tic Tacs at the grocery store so I could become an expert at swallowing the cocktail of pills I was prescribed. It meant eye tests for uveitis and cortisone injections. It meant being “different” in a world where kids are unkind if you’re not like them.

When I was 13, my arthritis meant remission. I thought I was cured. Everyone else thought so, too…

When I was 18, arthritis meant an intense relapse. It meant a literal overdose of medication. It meant chemotherapy medications, and it meant hair loss. It meant mono. It meant sickness and infections. It meant deferred exams, missed classes and doctor’s notes. It meant rapid weight loss, then rapid weight gain. It meant quitting all physical activities and more cortisone shots. It meant weekly blood tests and needles. It meant surgery. It meant seeing my parents and doctors cry together. It meant lying on the couch for months on end because my body couldn’t fight for itself. It meant weakness. When I was 18, arthritis meant my life was turned upside down.

At 23, my arthritis is still a character in my story, but its meaning has changed. It means making the best of the good times, and it means going on with life because there are so many positive things coming my way.

In retrospect, I guess this means I answered the reporter’s question accurately. What is arthritis to me? It’s my life. It’s my morning, my afternoon and my nightlife. It’s my everyday life.

What I failed to answer that morning was this:

What is my arthritis to me? To me, it’s a challenge I accept. It’s a reminder to never give up. It’s a reason to choose health over everything else. It has led me to discover my life’s goals and passions. It has shaped me into the person I am today. It seems odd to say to someone who doesn’t understand, “It’s my life,” but to me, it means so much more.

woman sitting on rock looking at mountains and lake
Kate enjoying a beautiful view

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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