What do you want people to know about RA?

Explaining what it’s like to live with rheumatoid arthritis can often be difficult…and frustrating.  We recently asked our Facebook community what they wanted others to know about RA.  With well over 100 comments, here are some of the most common responses:

RA is very real (and so is the fatigue) – people with RA are not just lazy

  • I wished it was called Rheumatoid Disease because that’s what it is- an autoimmune disease.
  • RA is sooooo much more than joint pain!!
  • I wish that people understood how many different variations of RA there are and that its not unusual for it to be accompanied by other illness, like autoimmune diseases like Sjogrens Syndrome.
  • It’s not all in my head and IS a very real pain.
  • It breaks my heart not being able to play hoops or trampoline or other fun stuff with my kids. I want to scream that I’m not a lazy mom but a mom with bad hip pain
  • When I accidentally cry out in pain it’s not for sympathy or to make anyone feel bad. It’s because I simply can’t help it.
  • I can be fine… then the fatigue hits and it hits HARD and means my body just refuses to go anymore
  • We tire so easily and never feel fully rested – feeling exhausted all the time gets old
  • My battery runs down almost everyday. My hubby has said a few times it is just mind over matter. I wish he could be in my shoes one day

RA may not look like what you think….

  • The commercials that show people with RA doing normal things after taking the meds are NOT the results for MOST people with RA. You can’t just “try a new med” and go back to a normal life a few days or weeks later.
  • Just because yesterday you felt good, today you may be in so much pain you can’t walk.
  • Just because you don’t look sick on the outside doesn’t mean you’re not sick on the inside.
  • Don’t equate the way we look to the way we feel. Just because I have a smile on doesn’t mean I’m not in pain. We’ve just become great actors

RA is unique from other types of arthritis

  • I wish people knew the difference between osteoarthritis and rheumatoid arthritis.
  • I wish they understood that it’s an immune disease not osteoarthritis. That it affects more than joints. Your lungs, heart and eyes all become involved.
  • To not say they have RA too. When they don’t have a clue. All they here is arthritis, and think its all
  • People relate rheumatoid disease to arthritis. They don’t realize arthritis is only one symptom of the disease. I do not have arthritis. I have an autoimmune disease that’s systemic.
  • You don’t have to be old to have RA
  • This is NOT like your grandmother’s arthritis

RA is unpredictable – It can be a daily struggle

  • For some, the pain never goes away. It’s a challenge to roll out of bed every day
  • Each day comes with a level of uncertainty  – we don’t know how we will feel from day to day
  • We experience loss of things others take for granted – like tying your shoes, putting on socks, writing, opening jars, or just walking.
  • RA has ups and downs- Sometimes things can take a turn in a matter of minutes…usually not for the better though

There is no cure for RA

  • Your juicing program/herbal supplement/massage isn’t going to cure me
  • We need more research to find a real cure for RA

Tell us – What do you wish more people understood about life with rheumatoid arthritis? 

Comments

View Comments (4)
  • Norreen Clark
    5 years ago

    People look at you and say she looks fine, there is nothing wrong. If I took my cloths off they would be able to see the damage of 35 years with RA. I find strong faith, the right foods and with me it is no gluten. Try and stay away from all sugar. Exercise when you can. I believe a lot of aliments are related to your gut. You are what you eat. Read the book 10 Days To Detox Diet by Dr. Mark Hyman M.D. My pain is so much better since I have given gluten up. No soda because of the HFC. And no foods with HFC. I do not have high blood pressure or high colesterall. I believe what you put in your mouth and always being positive makes a difference in life with your RA.

  • Diana
    5 years ago

    I wish people would understand that just because it has being a while since I made a comment, remark or complained about the pain or the tiredness it definatelly does not mean Im cured. “There is no cure, please! Im just nice enough to spare the world my daily whinning!”
    It kills me when I notice the surprise on peoples face when I confess being in pain or exauasted. -OH how come you are in pain again? You poor thing! It has being so long that I though you were cured!
    To me, thats a disquised way to suggest that I dont have what I claim to have.

  • slywy
    5 years ago

    I would like to see less talk of “cures” for diseases and more about prevention. RA is a good example. Something(s) makes a person susceptible to it, and something(s) trigger it. Find out what those somethings are and prevent/reverse them. For people with RA now it wouldn’t reverse the damage but would prevent more damage and possibly improve well-being. Same with diabetes 1 – stop it from happening in the first place.

  • Andrew Lumpe, PhD moderator
    5 years ago

    There are hypotheses that environmental and genetic triggers for RA exist and that could lead to prevention strategies or a cure. It would a wonderful day if that could happen!

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