Let’s get this out of the way: Arthritis is so much more than just joint pain. Because it is a systemic disease, it can affect other organs and systems in your body, and cause debilitating fatigue, painsomnia, anxiety, and more. When you live with arthritis, it is likely your symptoms have been dismissed by others who just don’t understand. It’s easy to feel overlooked, and unheard by your loved ones, your health care professionals, and the world as a whole.
That’s why this Arthritis Awareness Month, we asked members of the Global Healthy Living Foundation and CreakyJoints community: If you could create a public service announcement (PSA) to alert the general public about fatigue, disability, mental health and daily activities with arthritis, what would it say?
Our community’s responses were eye-opening. If you’re a person living with arthritis, they will speak to you. If you’re caring for someone managing arthritis, or a health care provider treating people with arthritis, they will help you better understand what others are going through.
These sentiments, curated from hundreds of comments and submissions, are a must-read.
Having Arthritis Means Others Can’t Always See It
1. “Arthritis is an invisible disability for a large group of the people who suffer with it. Unless we’re using mobility aids or have physical deformities, you can’t tell at a glance that we are suffering.” — @get.up.ivy
2. “First, I’d show a picture of a dejected-looking person with a caption: You can’t always describe it; you just FEEL it. Arthritis has invisible symptoms too.” — @denisecatsitter
3. “It can affect anyone, please be patient. Just because you can’t see pain doesn’t mean we’re not in it.” — Shireen K.
4. “We don’t all have visible disabilities — please trust us when we say we are hurting.” — Cherie E.
Having Arthritis Fatigue Is Not the Same as Being Tired
5. “I’m imagining more of a commercial. It shows a person going to bed early, getting plenty of sleep but waking up looking like they never slept. It shows them resting throughout the day and doing everything they can to take care of themselves. Then, it repeats like Groundhog’s Day, except the person looks more and more exhausted and moves slower and slower on each repeat.” — @aemie
6. “It [fatigue] comes over you in waves, pulling you down but still sleep won’t come. It’s as though your mind is wading through treacle, and you can’t hold onto your thoughts. Your soul is tired. It’s exhausting and overwhelming just thinking about what you need to do to get up and about in a morning. Every little thing you do is an achievement.” — Lucy J.
7. “Fatigue is when you are too tired to fall asleep and too exhausted to wake up in the morning.” — Jane G.
8. “It’s not tiredness; it’s an overwhelming crippling exhaustion that makes keeping your head up and your body vertical just too much to contemplate. But you get up and get dressed and go to work because you have to.” — Alexandra L.
Having Arthritis Means Sleep Doesn’t Fix Fatigue
9. “Fatigue from my disease is not just being tired. A ‘good sleep’ won’t fix it. Fatigue is when every cell in my body has just ‘had enough’ and it may take a week or a couple of months of full self-care to get back to a manageable level of fatigue.” — Zoe M.
10. “Getting more sleep doesn’t make you feel less fatigued — please don’t suggest we get more sleep.” — Bron W.
Having Arthritis Means Everyday Looks Different
11. “No, I’m not sorry I don’t know how I will feel tomorrow, next week, next month, I take each hour as it comes.” — @rosie_pyke
12. “On good days I run 5Ks, but when I’m having a flare up I can barely make it out of bed. Yet I look the same for either scenario.” — @crysnelson
13. “Each day is different with arthritis. I feel incredibly awkward asking strangers for assistance, but am thankful for their kindness when offering to open things or carry items for me during a flare up.” — @authorjpsummers
14. “That it doesn’t look the same every day. One day I could be looking totally ‘normal’ and the next day I need my cane and I cannot go out at all. Don’t judge by what you see.” — Suzanne M.
Having Arthritis Means One Activity Can Sacrifice the Next
15. “The things we do today can sacrifice our tomorrow. Arthritis isn’t just sore joints; it’s much worse than that.” — @sarah_and_jia
16. “Some days I can do a lot. Some days walking from the parking lot to the store takes all I have. I will always try to balance my energy against the tasks I need to do — but sometimes it’s just out of my control.” — @captainkayls
17. “It hurts like hell one day and you can’t walk and then the next day you are fine. Do not judge us just because one day we might not be limping and the next day we will.” — Julia W.
18. “Do not judge if someone needs to cancel at the last minute. We never know how we are going to feel day to day when we wake up in the morning.” — Kathie S.
Having Arthritis Means Grieving
19. “I’d give anything to go back to who I was before my diagnose but I can’t. This is my journey now. I wouldn’t be here otherwise.” — @captainkayls
20. “The anxiety and depression is real. So is the grieving. Therefore, a good therapist to help us navigate all that is most essential.” — @pfrog23
21. “Autoimmune forms of arthritis are evolving conditions. Every part of your body is in flux and with it your self-image, hopes for the future, and relationships. It is often a perpetual grief cycle. You accept your limits only to wake up and find you have new ones.” — @cristinagsaylor
22. “The mental and emotional strain realizing that what once came easily is no longer a given, or even an option is a tough pill to swallow. Be patient with us, it’s not that we don’t want to do the fun things we used to, we worry about being a burden or paying the price later.” — @nh_hiker_josh
Having Arthritis Is Like Having a Full-Time Job
23. “Managing chronic illness (and all the administrative tasks it requires) is a full-time job with no days off.” — @crumbsfromhistable
24. “It is constant work to take care of oneself and navigate the complexities of its effects on your mental health. There will be days you can’t do much, and on those days be extra kind to yourself.” — Leigh A.
Having Arthritis Means Trying to Explain It in Ways People Understand
25. “Remember when you had the COVID shot and your whole body ached and all you could do was sleep…. It’s that but worse…everyday…24/7…until forever.” — @jeanne.w.s
26. “Sometimes you can like it to how someone has felt when they’ve had a flu or COVID, that helps because it’s easy to relate to.” — Nicola K.
27. “[Fatigue] is like waking up with the flu every day!” — Julie W.
28. “Fatigue is like trying to push a giant boulder up a hill but never reaching the top it’s a continuous cycle. It’s nothing like being tired because you can rest but still feel exhausted like you haven’t had any rest at all.” — @unitedadvocacy
29. “It’s like walking through syrup on a daily basis. There is no relief.” — Jody F.
Having Arthritis Does Not Mean You’re Lazy
30. “She’s not a flake; she’s overwhelmed by her chronic illness right now.” — @abletoquilt
31. “A person with arthritis isn’t lazy. They are exhausted from pain and inflammation.” — De M.
32. “Be patient with us. We are fatigued and often in pain. We will get there but in our own time.” — Mary W.
33. “It takes a lot of energy for activities so please understand when I have to rest and recharge afterwards for as long as I need” —@sheyhouston
34. “I am not lazy because I cannot run 5 miles or lift heavy objects. Sometimes I can wake up early, walk a few miles, cook, and sometimes I just need a nap. My body is fighting itself, and how ever much I accomplished that day, I am proud of.” — @thrivingwithra
Having Arthritis Does Not Mean You Are Old
35. “It’s invisible and can happen at ANY age — yes, even to children! Arthritis is NOT an ‘old’ person’s disease and can have a major impact upon one’s life trajectory.” — @laurbrooke26
36. “It’s not just for grandma.” — @jeanne_werner_casella_
37. “There are over 100 types of arthritis. Arthritis can affect people of any age. Just because someone looks fine on the outside doesn’t mean they are fine on this inside.” — @gavinjones180
Having Arthritis Means Wanting to Be Understood
38. “Want to know how to help that person in your life with chronic illness? Listen and learn. The best support is understanding.” — @lindz.k3
39. “We might look like we are doing fine but every moment takes more strength than you could ever imagine. We don’t want your pity though we just want understanding and patience.” — Benita W.
Having Arthritis Means More Than Dealing with Painful Joints
40. “The effects of arthritis are not isolated to the joints — it affects the entire body. Chronic inflammation can be very dangerous, and unfortunately, it isn’t treated seriously enough. It can takes many years to even get treatment or a diagnosis.” — @bridget.m.ryan
41. “Most people with rheumatoid arthritis are never told about how inflammation can impact the lungs, heart, eyes, etc. until they are in the ER and, for many, it’s too late to combat lung or heart disease. We need more research on this.” — @dividivigirl
Having Arthritis Means Your Mental Health Is Impacted Too
42. “Many of us have been through a lot and may suffer from anxiety/depression as a result of this disease. Please be kind!” — @laurbrooke26
43. “Not knowing how you are going to feel when you wake up the next morning can cause anxiety, not being able to be social because of pain can make you feel isolated. If you know someone who has arthritis, know it’s not just physical, it affects mental health also, reach out to your loved ones, they will appreciate it so much.” — @thrivingwithra
44. “People who suffer with chronic pain conditions such as arthritis often suffer with mental health issues such as depression, you never know what someone is going through physically or mentally. Be nice, always.” — @gavinjones180
Having Arthritis Means Living with a Different Normal
45. “Healthy folks, remember how y’all felt during lockdowns? The loneliness, anxiety, even panic, sadness, uncertainty? If you can, imagine that’s your normal. No hope of “back to normal” or “after.” Add frequent frustration with insurance procedures, exhaustion from managing your illnesses, shame and guilt over the cost to loved ones, and spiraling fear every time a new symptom rears its head. That’s how chronic illnesses affect our mental health.” — @crumbsfromhistable
Having Arthritis Means Fighting a Constant Battle
46. “Our bodies are constantly inflamed, sore, and stiff and we are fatigued. This takes a toll physically and mentally.” — Sherryn D.
47. “Arthritis is a constant battle, some days we seem ok, other days we are a wreck inside out. You may not see it, but there is a war going on inside. Please understand.” — Radhika S.
48. “Chronic pain and fatigue almost everyday.” — Chaterine B.
49. “Don’t judge a book by its cover. Be kind to all bodies, you don’t know the battle they are fighting.” — @cpy01
Having Arthritis Means Having to Educate Others
50. “Also, can we come up with a different name besides arthritis. Autoimmune issues are not the same. ‘Arthritis’ in a dismissed. It’s like saying someone with Chrohn’s has a tummy ache.” — @jeanne.w.s
51. “First off I’d stop calling it arthritis because I feel it doesn’t explain what we as people with rheumatoid arthritis actually have. My rheumatologist actually likes calling it rheumatic disease with inflammation of the joints. Anyway my poster would say: Rheumatoid arthritis is not your everyday arthritis. Educate yourself.” — @sheyhouston
52. “Being younger does not make your arthritis better, less serious, or less in need of aggressive treatment.” — @get.up.ivy
