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The Hurtful Things People Say to Someone With RA
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Lainey_WebMD_Staff posted:
Rheumatoid arthritis can alter lives. Appointments with your rheumatologist, investigating what medications are going to work for you, coping with flare-ups while trying to work or spend time with your family can be overwhelming. Yet millions of people with RA accomplish it all while dealing with pain.

Explaining RA to friends and family can be challenging. Many people don't know that RA can affect the joints, skin, eyes, lungs, heart, blood, or nerves. Family and friends may think their "words of advice" are supportive but in fact they can be hurtful. "You look just fine to me." "You need to lose weight" are some examples of hurtful things people say.

Do you have a list of what NOT to say to someone with RA?
It's at the borders of pain and suffering that the men are separated from the boys.
Emil Zatopek

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An_215735 responded:
Believe me I know how you feel. Having RA is tough. I wqas on Mehtotrexate and also tried to use Hurmaria. But my insurance and job both ran out so I stopped . It was ok for 2 years i was able to just take some kind of asprin and manage to muddle thru. But for the last 6 months I have noticed that i RA is getting worse and i feel really overwhealmed. I am a person with alot of responsibilities. I have aging parents a mentally ill brother and a 12 year old newly told that he is a type 1 diabetic has other things wrong with him too. And my husband is no help what so ever. I think somethiong is also wrong with him. On top of that I also have several other things wrong with me besides just RA. On top of that I am the family provider My husband has not worked in 2 years and goes to school. He just learned that his unemployment has run out .
I went to my RA Specilist she ask me why i stopped taking my other meds I told her then she told me to try plaquenil I have tried it for a week. I had to go today because it made my vision very blurry. So the nurse told me to stop taking it now I have to wait till my next appointmen and my RA is flarring up again. So now I am in pain and do'nt know what to do.On top of that I had a new Dr for another problem tell me to lose weight I have already been doing that. So I know what that is like. I have also had other people to tell me that there is nothing wrong with me. But not Drs, just other people. Its because they can not see all this.or feel the pain.I just do not know what to do anymore.
 
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Lainey_WebMD_Staff replied to An_215735's response:
Hello Anon_81997,

Welcome to the community. Feel free to come here for support and join our discussions.

I am so sorry you are in pain and know that sometimes people don't understand RA. I am so inspired by your post. :)

Please let us know what your RA specialist says on your next visit and if you need to talk, we are here. This is a great community!

Soft hugs,

Lainey
It's at the borders of pain and suffering that the men are separated from the boys. Emil Zatopek
 
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amkhan12357 responded:
You really hit home with me. I have R.A. and look fine, as long as I am sitting still....
I have been struggling with the "looking fine" but feeling horrible dilemma. I almost need to justify/convince the significant persons in my life that I don't FEEL FINE without whining, complaining or feeling hurt and angry at being told how I feel. It is because my level of function has changed dramatically in the past year and the expectations of my family has not changed to match my current capabilities.
What good fortune that I look fine.Because I am capable of dragging myself through a grooming routine and by modifying my wardrobe to accommodate loss of range of motion, pain and weakness and select garments that facilitate donning and doffing minimizing discomfort I pulled myself together a new look.
Evidently I didn't do myself any favors. It actually decreased my credibility and because I do"look fine". What an assumption it is for others unknowingly judging me when it now takes me half of the day to get to the point that I can move and shower and dress myself.
Looking fine doesn't equate with actually being fine; physically, emotionally or spiritually.
What not to say to someone with RA?? (Or any other illness)
Do NOT tell people how they feel. Ever. Ask the person how they are and listen to the response. If you don't have time or can't make time delay the conversation to a time when you are able. Most people living with chronic illness make an attempt at trying to keep life as normal as possible.
Would it be preferable if i looked like I was knocking at deaths door or actually writhing in the pain I really am in? Would you believe me then? Just because I am blessed with looking fine don't devalue me by forcing me to defend and justify how I feel. Maintaining a pretense has a duel purpose. I convince others I am fine and get treated normally. Unfortunately the negative consequence flip side of this coin, living the lie and the loss of credibility, can be very damaging to a persons self esteem and lowering their sense of self worth often leading to or increasing depression. A.M. Khan 6 May 2011
 
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Lainey_WebMD_Staff replied to amkhan12357's response:
Hi A.M. Khan,

Thank you for replying and I loved how you decided to do your best despite the people who think you "seem fine"

I completely agree with your post and hope that we make May AWARENESS RA month!

Please use this community to vent or just tell us how your day was. We try very hard to support the members because sometimes it is difficult to find support from loved ones who don't understand.

Soft hugs,

Lainey
It's at the borders of pain and suffering that the men are separated from the boys. Emil Zatopek
 
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Fiona99201 replied to Lainey_WebMD_Staff's response:
The most horrible one I've experienced, was a former pastor: he told me (in front of the a large group) that if I "refused to" accept RA" that "God would heal me". He said I just needed to have enough faith.

We don't attend church anymore
 
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abad98eb replied to An_215735's response:
There is help for people in your job/financial situation. Here is a link to the Humira program. Many drugs are on this website if you need additional help. All programs have different criteria. Don't loose hope. https://www.rxhope.com/PAP/info/PAPList.aspx?drugid=4201&fieldType=drugid
 
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sallymander66 replied to Fiona99201's response:
Fiona-
I hate that for you....what a horrible experience. that pastor's comment was ignorant, and totally totally wrong. It is such a shame that often those in the church are the very ones to drive people away from it. makes me angry.

Bad stuff happens to good people and bad people, the Bible says "it rains on the just and the unjust" and it has nothing to do with how much faith you have. But I sure have been leaning on God for the strength I need to get through this RA mess. without the faith I have I don't know if I could get through the bad days.
 
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AprylDaun replied to sallymander66's response:
So many responses so similar to what I live through every day. My heart goes out to you all. My RA is uncontrolled and uncontrollable with any medications as of yet. They said I have 'an aggressive' form, and are at a loss atm as to what to do next. I care for my 4yr old grandson, and have a hubby who recently had a re-injury to a spinal fusion and can barely get around himself.


The most hurtful statements/actions in my life atm come from my eldest daughters, my father in law and my sisters. The statement 'You look just fine' hit home, since I've heard that one alot. Another one was 'If you went to church or prayed more God would take it away' from my father in law or my personal favorite, "There's always something wrong with you', when I have to cancel something at the last moment because it's an especially bad day.

Worst of all, was the ones that don't say 'anything' but avoid you because they look at you like you no longer exist since you can't participate in some things like you did before. For example, my entire family and my best friend which were always very close all stopped calling, coming by etc, when I quit being able to 'Go hang out and drink/sing etc' and be the life of the party. I used to be a professional singer, and it hurts bad enough that I am unable to do that any longer. RA in all it's glory has even affected my voice, even if I could push past the pain to perform now and then. Suddenly I'm worthless since I'm unable to be the 'Family Entertainer'. Part of me wonders if my siblings all fear that they may be next and ignoring me enables them to ignore thinking that perhaps they might be next. Our mother has a milder form of RA and is crippled while my Grandmother had a severe form of RA like my own, and she died from an RA related heart attack at 51, 4 yrs older than I am atm.

I no longer have 'flares' like in the beginning that lasted a few hours/days/weeks. It has been non stop horrendous pain for 5 months now, to the point where I broke down and took the narcotics they pushed.. which don't help much and make me sick.

But Yes I do pray, Yes I do have faith and Yes 95 per of the time I hide how much pain I'm actually in and 'push' through it to be 'normal'. But that 5per afterwards esp every night has me in tears. I keep praying they will get to a point w/stem cells that they can treat those that other means don't work on. My daughter saved her 'cord' blood and had it stored for me, so if they ever reach that point I have a fighting chance. Until then, it's one day at a time. Sorry if I was a bit of a downer, I don't usually come across like this. Normally I'm 'very upbeat' and 'positive' to the outside world. Just felt after reading some of your stories, maybe here I could be honest about it all.
 
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Lainey_WebMD_Staff replied to Fiona99201's response:
Hi Fiona,

Oh my goodness! I can't even imagine how upset you were to hear such an awful thing!

Please know that you are understood here. RA is a painful debilitating condition and I hope you find some relief soon.

Soft hugs,

Lainey
It's at the borders of pain and suffering that the men are separated from the boys. Emil Zatopek
 
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Lainey_WebMD_Staff replied to abad98eb's response:
Thank you for posting the link, Abad98eb!

Many of our members lose insurance because they can't work anymore and need all the resources we can find. It means a lot! :)

Lainey
It's at the borders of pain and suffering that the men are separated from the boys. Emil Zatopek
 
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Lainey_WebMD_Staff replied to sallymander66's response:
I think that was well said, Sallymander!

Soft hugs,

Lainey
It's at the borders of pain and suffering that the men are separated from the boys. Emil Zatopek
 
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Lainey_WebMD_Staff replied to AprylDaun's response:
AprylDaun,

It hurts a little more to have those comments come from the ones we love and trust.

It is a shame that people can't see your pain and wish you warm healing, vibes.

Soft hugs,

Lainey
It's at the borders of pain and suffering that the men are separated from the boys. Emil Zatopek
 
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JustBobby responded:
I hear you all. I am 79 and have only been diagnosed with RA a little over 2 years but probably had it for more years. Because I have never complained and 'looked normal' my GP never picked up on it or did the tests to find it. Anyway I have so many years of living with pain that I no longer even try to explain to others. I just soldier on and try to act natural and only complain when I can't go on. I am also fotyunate that Methotrexate has so far kept me under control, and my joints are not distorted very much. I feel the pain of you all and know that somehow you all will survive. Keep the faith
 
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nousha10 replied to An_215735's response:
I could tell from your text that you are very young.
Never mind, people are just ignorant, just pray in your heart and tell them "God Forgive You".
I had RA for 11 years now with flare ups now and then, but thank God there are still good doctors around and I shall include you in my nightly prayers (I pray for my family, my friends, my doctors and all good people in the world).


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