Community Thoughts: What Do You Wish More People Knew About RA?

Community Thoughts: What Do You Wish More People Knew About RA?

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!

Comments

View Comments (7)
  • Patricia Darstein
    2 years ago

    I wish people understood that there is NO real cure for RA. People think that the medical community has this totally cured when that is NOT the case. Also, seems like the RA can be better but people also don’t realize just how bad the side effects are from the meds that take care of the RA. Also wish all these anti-pain medicine individuals would also STOP. Our pain is real. You live with it and have NO opioids. See how you “deal”. Kids screaming, life “moving” and you just trying to cope!

  • Elizabeth Riggs
    2 years ago

    I wish when I’m having a good day that people wouldn’t assume I’ve miraculously gotten “well.” Tomorrow may be horrible because I do too much on “good” days.

  • cannonsplash
    2 years ago

    Wow. Great list. I’ve heard, said or wanted to say all of them. Thanks

  • janda13
    2 years ago

    I promise…I am not avoiding you or throwing a pity party. Some days it is just easier to deal with the pain alone. Pretending you aren’t in pain is harder than the pain itself.

  • Richard Faust moderator
    2 years ago

    Thanks for writing janda13. Know that you are not alone in having these bouts of wanting to be alone. This article from one of our contributors looks at the loneliness, sense of isolation, and desire to isolate that can often accompany RA: https://rheumatoidarthritis.net/living/one-is-the-loneliest-number/.

    You can always find a sympathetic ear here or within our Facebook community at https://www.facebook.com/RheumatoidArthritisDotNet/. Best, Richard (RheumatoidArthritis.net Team)

  • Susan Slater
    4 years ago

    Your list is fantastic! I am not here to share my medical experiences. I’m here, rather, looking for a way to find a voice for my RA, to advocate for those of us who are being discriminated against because of our invisible illnesses.I have had to take my own family members to court, to attempt to prevent them from limiting my access to my family inheritance. My father established my portion of my inheritance from him, in a special needs trust, so I would not lose my benefits from Social Security and Medicaid. Unfortunately, he named my brother and sister as trustees of that trust. We are using the local ARC organization to manage my funds. My siblings, last year, took legal steps to prevent me from having full access to the funds in my trust. We are now in a legal battle to attempt to remove them as trustees, and will, hopefully, settle out of court. If I did not have RA, and as a result, receive government benefits, I would have inherited, outright, the funds in my inheritance! What my own siblings are doing amounts to discrimination, pure and simple! I am sure others with invisible illnesses have experienced discrimination in one form or another. I am looking for a place to put a voice to the indignation and frustration I feel as a result of my siblings’ actions. I have searched countless websites, including the Arthritis Foundation, to find an advocacy group that could help me champion my cause, to publicize and educate others about the many ways discrimination and ignorance affects our lives! I have an excellent attorney. But I want others to hear my story, to become as outraged as I am, about the way we are treated by others, including, sadly, our friends, family, and even our doctors! I would like to hear feedback from you and your experts at this site, about options available to me, and others like me, who battle, not just the disease, but it’s legal and social ramifications!

  • Joy29
    2 years ago

    My hands are in so much pain plus I fell making my right worse…but you have no idea how I relate to what you wrote. I don’t usually reply to things on the internet (new to that) but I had to because literally read in shock your post. IT IS UNBELIEVABLE HOW SIMILAR TO MY SITUATION. Don’t even want to share how similar…..wow….I fear the same people in my life as you mentioned and yes they did similar thing and YES, I have been thinking of everything and reaching out and yes you are 1000% correct at least in my experience about the discrimination and yes I am as OUTRAGED as you and don’t know what to do. OK, my hand hurts too much but guess when feel so strongly/angry that adrenaline kicks in. I wish I could talk to you. I literally am afraid to share too much here. I even tried to get up the nerve to call my local tv station to find some way to increase awareness of “invisible illness”. I have issues of harassment, etc. and because I struggle to just get through the day…..just hard lately to make all the insurance/medical phone calls and no sleep I am “not myself” or rather my former self as we all might understand but yes somehow there has to be a way but I haven’t found it either. There are support and advocacy and outrage on so many other “things” I don’t want to mention because don’t want to unintentionally offend any “group” but have even mentioned to crisis counselor “if I was and went through the list of “classifications/labels” there would be “outrage” as you said. I am seriously interested and feel my life literally depends on it as it cannot continue as is. I’m glad you have good lawyer. I missed out on that as was too ill (had other serious health stuff too). I hope someone replies with suggestions.

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