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20 Things People With Rheumatoid Arthritis Want Others to Know

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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.

Originally published: June 23, 2016
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