19 Truths People With Arthritis Wish Others Understood
RA often has few outwardly visible symptoms, which can make living with the challenges that come with it difficult for people to understand. So The Mighty worked with the Arthritis Society to ask our readers who live with rheumatoid arthritis what they wish others could understand about the condition.
This is what they had to say:
1. “You live in the moment not knowing what the next hour will bring you.” — Jacqueline Scott
2. “Having rheumatoid arthritis (RA) is like riding a roller coaster — you don’t know until you wake up in the morning if you’re going to have a up day or a down day. I used to plan everything until I got RA, now my day all depends on how I wake up feeling.” — Lori Hummel Basile
3. “Having rheumatoid arthritis is a lifelong commitment [to] knowledge about your body. You work in partnership with your family doctor, your rheumatologist and your pharmacist in having a control of your health. You have to be able to forgive yourself days that you do absolutely nothing and on good days you can accomplish many things… Never let your condition get you so down in the dumps that you gave a hard time to crawl out. Support, support and support is totally crucial.” — Violet Roberts
4. “I push myself daily and pay for it dearly. Just because I can run around a dog show ring a few times, or ride my horse, or bike or swim for an hour, all with the aid of my meds and a strong will, doesn’t mean I won’t be hobbling around later for it. But you’d never hear me complain, and if I did, I would be a 10 out of 10 on the pain scale, though you still never would guess from this stoic face.” — Lauren Meadows
5. “I’ve watched friends and family drop out of my life because of it.” — Gracie Soligo-go
6. “I’m so thankful for the days that I feel good and just mind myself when I feel bad but try to find something that makes me smile in it all.” — Jacinta Dowling
7. “Since being diagnosed, I don’t recognize myself.” — Lisa Parker
8. “Although I’m in remission, I still get lots of pain in my ankle when I’m on my feet for too long. RA has gone away for a bit, but it’s still left me with a reminder that maybe one day it will be back. With every ache I feel now, I worry that it’s back.” — Andrew Banister
9. “It’s a living hell, but I keep going for my family.” — Carole Learmonth
10. “Most people don’t understand how painful arthritis is. Because they don’t see an injury they think you’re exaggerating how much pain you’re in.” — Stephen Scott
11. “It’s not just a disease for old people. Kids get it too.” — Deb Hannah
12. “I hate this disease and how much it’s taken from me. Few people seem to understand this and have little concept of how much we suffer.” — Lynda Clarke
13. “It’s not limited to one joint. Or just joints at all. It’s debilitating and excruciating pain. It’s not in my thumb. It’s in every inch of my existence all the way down to my soul.” — Tammy Leigh
14. “I wish my family understood how painful and how hard it is do to just everyday tasks.” — Shelly Slack
15. “RA is not the same as your sore foot or your sore back because you overdid it. RA is a life change .” — Savannah Badry
16. “The fatigue and foggy head are the hardest parts to deal with for me, yet no one knows they exist.” — Emily Burnie
17. “My disease doesn’t have me nor does it define me… But I do have my bad days where I feel drained, depressed and in pain. I’ve learned to make the best of my bad days and to keep going. I’ve learned that exercise helps and that I can do whatever I put my mind to. I try my very best not to let this disease stop me from doing what I want.” — Montana Fazi
18. “It’s a lonely life to live.” — Jacqs Turner
19. “No matter what, I still live my life, and I don’t let it beat me because it would be easy to be miserable but I’d rather be happy.” — Amanda Thurow
*Answers have been edited and shortened.
Melissa McGlensey is the former News Editor at The Mighty. Her writing can also be seen in Ms. Magazine, on the Ms.Magazine blog and in The Huffington Post’s Good News, Comedy and Impact sections. Melissa is also a New York City comedian who does sketch, improv and stand up. She is passionate about social justice, politics, Thai food, literature, disability rights and more. She is currently in a long-distance relationship with her cat, Sneakers, who lives in California. You can follow her on twitter at @OhHeyMeliss.
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