Community Thoughts: What Do You Wish More People Knew About RA?
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We asked our Facebook community: “What do you wish more people knew about RA?” Over 200 people responded! Check out what they had to say – and feel free to share to further raise awareness.

In general, I want people to know…

  • That it’s an autoimmune disease that affects your whole body, organs, and muscles.
  • Even though I don’t look sick doesn’t mean I’m not.
  • Osteoarthritis is not the same as RA!
  • It changes daily and effects your whole life… and it’s cruel.
  • You try to pretend you’re always ok… even if you’re not!!
  • We are prisoners in our own bodies and there isn’t an escape.
  • That I cannot make long term plans because I never know what I’m going to feel like from one day to the next.
  • DO NOT TAKE THIS DISEASE LIGHTLY!
  • Eventually it will turn inward and attack your organs.
  • If you don’t have it you will never understand it!
  • That everyday tasks take 3 times longer.
  • That if I make an effort – to cook for you, to visit, to babysit your kids, or some days, get out of bed for you – it was because I love you.
  • Please do not judge me on my bad days and just be thankful you don’t have this.
  • Education before discrimination.
  • It hurts like crazy.
  • We need an “ice bucket” challenge.
  • I don’t know what it’s like to not hurt.
  • That it’s all-encompassing.
  • This disease is a lonely one.
  • That RA controls my day.
  • That we still have the disease even if our fingers do not twist severely.
  • That we are not attention seeking, pretending, or nuts. I would love to be just normal.
  • That inside we still want to do everything we could do before, but we cannot.
  • That a little help can go a long way.
  • To have a day without pain would be like winning the Lotto.
  • I’m thankful for each new day.
  • That it changes who you are and I miss the me I used to be.
  • I’m not pessimistic, I’m not thinking too much, the pain is real.
  • I’m trying so hard not to let it dictate who I am as a person.
  • With RA it’s like a life sentence of daily corporal punishment.
  • The mental affects it has on a person.
  • It’s a life changing, crippling disease.
  • That when I say am sick I am stating a fact.
  • That it is a progressive and debilitating disease. It sucks the life out of you.
  • That it sneaks into your life like a thief and slowly but surely steals everything away from you. Your social life, your work, your hobbies, your time, your friends, your income, your energy, your sleep, your ability to make decisions and plan.
  • The lack of predictability is incredibly frustrating.
  • I was so active and now I just live on pills!!
  • I hate that I can’t trust my body anymore.
  • I wish they knew how mad you get at yourself for not being able to do the simplest tasks.
  • That it has made me determined and strong.
  • That no two of us are the exact same.
  • That I do the best I can with what I am given on a daily basis.
  • How hard day to day life truly is.

In regards to symptoms

  • How good I can be one day and how bad I can be the next.
  • That sometimes I’m doing great (and am more grateful than you can imagine!), but without warning a flare of symptoms can hit. It may be months before I get it under control again.
  • Just getting out of bed can be misery.
  • The chronic pain is invisible.
  • THEY aren’t bunions baby!
  • That a different part of your body can hurt every day.
  • Pain and exhaustion are usually lurking around the corner
  • How every breath can hurt .
  • My joints can swell within hours and look (and feel) terrible.
  • When I’m nauseated even the smell of food makes me hurl.
  • When the flare up and fatigue last so long, depression starts to set in.
  • That it really does travel from joint to joint randomly.
  • Sometimes the pain makes me cry.
  • The pain never gets better it just changes.
  • The pain isn’t just confined to the joints but also the tendons, muscles, and organs are affected.
  • Your mind is telling you I can do this, but your body won’t let you.
  • I never know what to expect from my body.
  • Symptoms are all over the map.
  • I hide my pain out of fear of being criticized.

When it comes to treatment and “cures”…

  • There is no cure!
  • I’d like people to know that the “sure cure” they heard about will NOT work.
  • There are loads of side effects from drugs.
  • That avoiding certain foods or taking magical mystical vitamins will not help me.
  • The medications we take affect us differently.
  • That there are meds that prevent or slow down its damaging effects.
  • We gain weight even if we eat right or not very much.
  • Just losing some weight is not going to cure it!
  • The meds we take to slow or stop the damage it causes are every bit as toxic and nearly as expensive as chemotherapy for cancer and we have to take them until our end.
  • I have to take a weekly injection just to function.
  • Tylenol won’t take the pain away.
  • That my medications don’t “fix” me!!
  • That we are not put on medication easily. The decisions are thought out to figure what is best.
  • Our weight may fluctuate due to medicine.
  • Don’t touch me because I may break! No joke! The meds I take make my bones brittle.
  • Some days my meds are harder on me than others.

Regarding fatigue

  • That when I have fatigue I’m not being lazy.
  • That fatigue is often as bad as the pain!
  • That when I say I am tired it isn’t the same tired as theirs.
  • RA fatigue is PROFOUND and DEBILITATING!!!!
  • No one can imagine how bad it can be.
  • Fatigue means that every step is a huge effort and just a trip to the mailbox looks impossible sometimes.
  • That when I say I need to rest it’s because that’s what my body needs.
  • All I can do is sleep – not because I want to, I have no choice.
  • I don’t want to be this tired.

Regarding age…

  • That arthritis isn’t an “old person’s” disease.
  • That young adults and children can get it.
  • That other people’s aches and pains might come from getting older, but mine don’t.
  • That JRA isn’t any less significant than RA.

Regarding other conditions…

  • RA can lead to Pulmonary Fibrosis.
  • That the pain you get in your thumb on a wet day isn’t the same as my RA.
  • RA means that every sickness I do get is magnified 100x.
  • I DO NOT HAVE ARTHRITIS I HAVE AN AUTOIMMUNE DISEASE.
  • That other diseases overlap with arthritis.
  • That normally when you hear “arthritis”, it is referring to Osteoarthritis (OA) or wear and tear arthritis. RA is not the same.
  • Stop comparing my RA to someone who is a diabetic… Two different illnesses!!

When it comes to dealing with other people…

  • They always say, “How can that be? You are so young. May be you are just over worried.” How I wish I was worrying too much.
  • Do not pity me when you see what I go through. I’m thankful for your help but please do not pity me.
  • I have mood swings and get mad because of the chronic pain, I don’t mean to it just happens sometimes.
  • When people say “get well soon” when it’s lifelong is frustrating.
  • I hate that my disease has affected my family.
  • When I say I can’t do something, it’s not that I don’t want to. I just can’t.
  • I always say I have RD (rheumatoid disease). Helps educate those that think it IS just arthritis.
  • That you’re not always gonna be in a great mood when you’re hit with severe pain.
  • Sometimes I do wish they could be in my body for one hour just to understand it better!
  • I hate when they say you just need to exercise. It’s depressing not to be able to do the things you love.
  • We need your understanding, we need your physical help with things we no longer can do ourselves, we might need to just vent one day, we might just wanna laugh the next.
  • If someone you love has RA, then read everything you can about it, including sites like this.
  • I’m tired of people saying “you’re always sick.” As if I wouldn’t change that if I could.
  • When I am hobbling along trying to continue as normal don’t call me names like “slow coach” or “hop along” – it’s degrading and highlights my struggle more than you know.
  • The truth is, I do not feel the need to tell anybody anything. I will live with it and deal with it the best I can. Whether anybody else understands will not change a thing.
  • Stop asking me if I feel better because I don’t .
  • I’d like them to understand that mornings are off limits for planning activities. Please don’t take it personally.
  • It’s so stressful if you are moving so slow and everybody around you is always moving so fast.

What do you wish more people knew about RA? Please share in the comments!

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