Rheumatoid Arthritis Disease May Be the Scarlet RA
The Infamy of Rheumatoid Arthritis (RA)
I’ve answered several questions lately about Rheumatoid Arthritis and secrecy. Is there something embarrassing about RA? Can we just talk about it with anybody?
Lucille Ball was one of the most famous people with Rheumatoid Arthritis. However, when she died, I did not hear about her RA battle. It was not until I did some RA research that I realized Lucille Ball had Rheumatoid Arthritis.
Why was that? I was a huge Lucy fan; she was a funny girl’s idol. She made it cool for a woman to be goofy instead of just glamorous.
Lucille Ball scrupulously hid her Rheumatoid Arthritis from her adoring fans as well as from others in her industry. I’ve read that she did not tell people that she was in pain or why she required rest. When you read about how, as a celebrity, Lucy hid RA, it seems like she felt some kind of humiliation about the disease.
Lucy’s not the only one. There’s Kathleen Turner, who was willing to let people think she was an addict instead of let on that she had Rheumatoid Arthritis. It reminds me of a post by Sara a while back in which she called RA the Loser Disease.
As I discussed with IrishBookFairy recently, most RA’ers do become private about their Rheumatoid Arthritis symptoms. Before I started a Rheumatoid Arthritis blog, I had to practically pry information from a couple of people with RA who were corresponding with me. I’ve been trying to figure this out for a while.
Early in the last century, people hid cancer. But that was due to the likelihood of impending death. Fortunately, both of those are much reduced today.
I’ve read that people with psoriasis or shingles often hide their illness due to embarrassing symptoms. Are RA’ers doing the same thing? What humiliation is there in having an illness that you cannot have caused?
Does Rheumatoid Arthritis disability make us feel humiliated? Is it caused by the reactions of others to our pain? Or potent Rheumatoid Arthritis medicines? What do people with Rheumatoid Arthritis symptoms have to be embarrassed about? Is it the Scarlet Letter A of diseases? What for?
Recommended reading:
- Celebrities and Rheumatoid Arthritis
- “Dealing with RA Is So Much Easier than Lupus” –Kathy Lubbers
- Some Answers for Rheumatoid Arthritis Just Bring More Questions
- The Birth of the Rheumatoid Arthritis Warrior Blog
For me, not talking openly about my RA helps me to avoid comments like “if you’d lose some weight” or “exercise is the best for that” or “I have arthritis in my thumb” or “have you tried…” or some other ignorant comment from people who don’t hear the word “Rheumatoid” – they only hear “Arthritis” and then everyone either has an opinion or “the same thing”. It amazes me how many people truly don’t care enough to ask – really ask – as if they’re interested. I was surprised and yet understanding at the same time about Lucille Ball’s plight with RA. Sometimes its just easier to keep quiet and suffer in silence.
Yep. :razzmad:
Some people do hide, yes its true.
But I dont discuss it much for other reasons.
1. People get this “glaze-over” if you try to explain your pain too long and detailed. It’s not that they dont care I dont think, but that they are helpless to change your pain and it disturbs them. (OK some dont care!)
Also, most people have such huge misconceptions of what it even IS, that it takes me half an hour of MY life to educate them, which I didnt mind doing so much the first few years, but now I leave that to others. I’m really tired of people asking me if I’ve tried glucosamine, or some vitamin.
2. I don’t want RA to be my identifier. “Oh there’s Kay with the RA”. Nope, thats not who I am. I feel good when someone says to me “but i didnt even know you had RA.” *(this does get harder to hide as the years go by and the disease progresses even with medications.)
Prime example: getting up from a chair at a restaurant after sitting a couple of hours …. no way to hide the slowness there!!!)
Not to minimize people like Kelly who put themselves out there to educate and support. They are brave and wonderful and I think they make sacrifices to help us. They are willing to say “I have RA and here’s what I do ..you can learn from me and let me hear from you.”
We all see the people who tweet on twitter how miserable they are, how much pain they are in and cant stand it one more day. Really? Do you believe that will get you followers? They remind me of “Eeyore”
People run away in droves, its not the way to build friendships. “I think I’ll be negative and depressing today online ..that’ll get me somewhere”
You could MAKE some friends on online by being friendly and helpful. Attract people who will understand and then privately carry on a conversation into more depth with someone you grow to trust and relate to.
Or at the rheumy’s office, you start a conversation with another patient waiting, and it has to be all about them and their trials and difficulties. Im not unsympathetic, geez I have the same pain and hardships. But I’d rather hear about your triumphs and how you lived a good life anyway. The pain discussions are best received with your rheumy and your closest friends/partner. Or on a site like this, for sure!
I do see more celebrities coming out and owning RA. It always sheds a healing light on the subject. But you have to admit .. once you do this, you will forever be known as “THAT DISEASE celebrity” Look at Howie Mandel, who admitted to germ phobia. Go read his tweets and know that he is reminded of it by his fans every five minutes. I’d hate that.
This is just my opinion and so far its worked well for me.
I swear Kay, I’ve told you: I’m going to just use your comments for a guest post & take the day off. So well done. So thorough. So organized. Even funny! :heh:
Kay, You are speaking my exact feelings…wish I could say it as well as you. But, that is the truth of why I hate to talk to about RA down to the letter. I want to learn how to live best in spite of this disease. How to find positive ways to cope, don’t want to just be brought down by all the pain and misery. I get it more than anyone can ever know. So, thank you for speaking your mind and as it turns out my mind as well. 🙂
I agree with Doreen at first you have a tendency to tell people, then you get the comments like she stated above about losing weight or they have “some” arthritis in the finger or knee. Or you get the total opposite, someone who has had someone in the family years ago with RA. Then they proceed to tell you how awful it was watching the crippling affect it had on that person. Basically either way you look at it, you don’t really want to hear the comments. Sometimes its all you can do just to go to the grocery store, you don’t want to have to use anymore energy than you have to. Sometimes explaining it over and over can be exhausting!! At least that’s my theory, I am to the point where I just get tired explaining, cause you know deep down inside—-THEY AREN’T LISTENING!!! I know we have to get the point across somehow. There has to be a better way.
I agree that most people don’t get it. First, it’s that you don’t look sick and then if your joints do look like something’s wrong, it looks ugly. Unlike cancer, there is no “win” —–MTX or other treatments go on and on. There is the thought that it isn’t that bad—-we won’t die—-although actually we do sometimes die from complications of RA. Somehow telling people that the pain never goes away and that the little illnesses that they expose us to can be big problems for us seems like we are weak whiners.
People are pretty impatient for anyone with a problem to get over it.
Not to mention that we have limited energy, and educating everyone takes energy!
Also to continue to have a life like we want, we may choose to hide symptoms as much as possible for our own sense of self: RA doesn’t define me or denial of it’s effect on my life.
For me, I think it is all of the above.
Totally agree with Doreen and add one more. It’s the look that you get from people when they say “oh, how terrible for you.” Their pity embarrasses me more than anything to do with the disease.
yes,that’s it too, Karla..I hate having anyone pity me. I am a survivor and not a victim of RA! My story is of thriving in the face of dire circumstances. I would rather talk about my latest artistic creation or my kids..How faith keeps me strong and helps me be better inside whether or not this body is broken or not…I want inspiration and seek to share inspiration..I have no energy for drama mine or anyone elses. Thank you for sharing.
My JRA makes me humiliated because its rare in children to have so much pain in joints.AND to most of the peopl the word “arthritis” means old people’s disease ,and may be this is the reason i hide it from all my friends. its just so embarrasing to say “i hv arthritis”.my childhood is over now, so will be the teenage[still 2 years left]and so on.I think that on telling his to friends,they will just laugh at first.i m already fed up with pain and medicines,i hv faced so many comments on my walk durng childhood.so , hiding is a better way to escape all questions like”hw long hv u be on medications” “how much more time” “when will u b completely ok?” and all that…..i m ok with myself..and i HATE sympathy bcos it makes me cry.
I have JRA to! Had it going on 5 years But official I have had for a year.I know, what you mean, People our age can be so mean. And they look at you like you are old or something!
-Pam
I’m new to this site–I find it refreshing. Thank you Kelly for all you do.
On this topic, I agree with many that have commented. Most people do not get the disease and explaining takes too much energy for the glazed-over look you get in return.
During my worst times, I feel like all I do is talk about RA–with my husband, my family, my doctor, the insurance company, the drug company…..it is nice to be able to have a conversation with my neighbors or other acquaintances without having to talk about it yet again. Some people in my life know I have RA and some don’t. For now, that works for me as I can have a break now and again and not have to spend my entire day talking about it.
Jenelyn,
Welcome! Thanks for for the thanks. 😎
And good point about having friends in both camps.
OMGH! yes! I can’t tell just anyone. everyone twitter knows. But in my Life not many people know, Who aren’t family or close friends. Sometimes I just want to keep to me. It’s odd because yet you want People to know what it is! But Some People my Age Don’t know what it is or you have to tell them like 3 times! But Sometimes I am embarrassed of It. I think it’s because I’m So young but Some I am. But You know When I read Lucille Ball Had it to! I was like WOW! even her, I have always loved her show.
What a great post and what thoughtful responses.
With my daughters RA we made this fairly public from the start. For one, we needed the support; I didn’t know how to raise a 1 year old let along that little ones could get RA and that she would undergo years of treatment, surgeries, supplements, doctors, therapy… etc.
At some point in being public about her condition… we backed away. We got really tired of the comments: “have you tested her for food allergies?” “maybe it isn’t RA, maybe it’s lymes” “do you have her on glutamine?”, etc… you know… you have all heard them. These comments ate at me and drove me crazy, I know in my heart that people were trying to be helpful and kind, but it is hard to listen to from so many. At that point, like I said, we backed off. We stopped talking to people about it and pretty much made arthritis an “in the closet” topic. Then around 2005 we started to see that our daughter was embarrassed by her JRA, that she was feeling ashamed and sad. That drove us in to high gear to make it loud and clear through involvement with the arthritis foundation and through writings online (she had a caringbridge site)… she has JRA, but it doesn’t rule our lives!
Since that time there are still comments… tons and tons of comments. There are still frustrations about being more open, there are times I feel like we are coming across as pour us (I try SO very hard to NEVER be that person), there are still times (many) my daughter chooses to not speak about her JRA and that is fine… she has a life beyond it.
On the flip… I have RA and I talk to almost no one about it! My husband, my girls, my mom and a close friend. That’s about it. I think if anyone took the time to glance at my hands they may wonder why I look like I should be green and out of the wizard of oz, but they don’t or if they do they don’t’ ask (I don’t’ blame them… hey, why are your hands all mangled?). My reasons for not speaking are similar to those all ready written. I don’t’ want to come across as whining about my life. I love my life and never want RA to have so much control over me that I can’t find the beauty in each day. This doesn’t’ come without the reality that I do have to search out beauty as I wake up, aching and exhausted because it has been weeks since I had a solid nights rest.
An acquaintance of mine, who also has RA said to me the other day (she meet with me for coffee when she found out about my daughters JRA and through that talk I shared a bit of my experience with RA as she was seeking options) – “I am in a good place right now and I just don’t’ care to hear from anyone else with RA that isn’t in that place too – I don’t want t know that stuff is out there”. I listened to that and it broke me, I thought it isn’t about hearing the bad place a person is in, but about hearing the heart of the people around you and knowing in your heart you can sympathies with their pain. I pray… Lord, protect me from ever not wanting to hear the heart of those around me and continue to let me see the beauty in each day you give me.
To Kelly: this site is a blessing… I appreicate your honesty about your struggle with the technical and the emotional/physical side of doing this site, but I have to agree…. you are doing God’s work here! Thank you!
Theresa,
Thank you for sharing. You have so much experience to speak from. I loved your prayer. Amen. :rainbow:
“I’ve answered several questions lately about Rheumatoid Arthritis and secrecy. Is there something embarrassing about RA? Can we just talk about it with anybody?
As I discussed with IrishBookFairy recently, most RA’ers do become private about their Rheumatoid Arthritis symptoms. Before I started a Rheumatoid Arthritis blog, I had to practically pry information from a couple of people with RA who were corresponding with me. I’ve been trying to figure this out for a while.
I’ve read that people with psoriasis or shingles often hide their illness due to embarrassing symptoms. Are RA’ers doing the same thing? What humiliation is there in having an illness that you cannot have caused?
Does Rheumatoid Arthritis disability make us feel humiliated? Is it caused by the reactions of others to our pain? Or potent Rheumatoid Arthritis medicines? What do people with Rheumatoid Arthritis symptoms have to be embarrassed about? Is it the Scarlet Letter A of diseases? What for?”
I think you’re making a lot of incorrect assumptions about RAers in your post, Kelly.
You seem to think that people with RA feel embarrassed about, humiliated by, even castigated for their disease.
You would do well to remember that not everyone feels a need to make their RA into a crusade. I myself have noted in my blog (and I never could be accused of being anything but open about my RA) that I will not post every day because my RA doesn’t define my life.
There are those who are called to lead by sounding the trumpet. Obviously, you are one of them. But there are those of us who are called to lead by the way we conduct our lives or by simply LIVING our lives.
Please don’t chew us out because our decisions are not yours.
Wow. I didn’t read any “chewing out” of others in Kelly’s post. What did I miss? All I saw was her asking why this disease is considered embarassing by some (maybe even most) of the people living with it. I’m not in the right place emotionally today to articulate an answer to that question, so I won’t try. But cut her some slack. She wasn’t passing judgment. She was asking a question.
Well, for starters, Kelly said that “most RAers become private about their RA symptoms,” and that she practically had to pry information out of some of them. While that may not be a chew-out, it could be perceived as being a bit judgmental.
Fact-based statement: “It was difficult to get information from them.”
Judgment-based statement: “I practically had to pry information out of them.”
For me, the whole post had that sort of “crusade”-type of tone — one that implied that perhaps there was something not-quite-right about you if you chose not to join in.
Anyway, JMO. YMMV, of course.
It seems like you read a different blog.
My only clarification: those 3 folks are personal friends. They would not agree with your interpretation. They were glad to find someone in whom they could safely confide. I think I meant it took them a little while to realize it was safe to share with me. This occured well before I ever began to blog. However, others have brought up this topic recently here on the blog & elsewhere. Hence, my post.
“It seems like you read a different blog.”
I don’t think I understand this statement at all. I was not criticizing your *blog*, merely what I felt was the tone of this particular post.
“My only clarification: those 3 folks are personal friends. They would not agree with your interpretation.”
Look, it’s obvious that you, as the author, know a lot more about the situation than I do. But I can only interpret it to the extent that I am able with the information that you, as the author, provide to me. I’m guessing this is one of those situations where a few differently chosen words would have made a huge difference in my reading of the tone of this post.
You have to remember, however, that people will interpret things differently depending on the lenses they are wearing at the time (in pain vs. not; young vs. old; single vs. married, etc.). Moreover, regardless of what lenses they happen to be wearing, some people will not agree with what you are saying anyway. That happens to me a lot. There’s nothing wrong with that.
I have said that quite often that having RA is like having a big “A” stamped on chest as the main character did in the Scarlett Letter. I am in the process of looking for a new job and I am worried about my RA especially with winter coming up. I can’t tell a potential employer and I have to keep it to myself for a bit of time.
I told my husband during my last flare that I was going to make a T-shirt that just says “I have Rheumatoid Arthritis” so people will quit asking me what I did to my back or leg or foot when I’m shuffling around. 😛
Speaking from the perspective of one who had polio first, and now RA, I think I can say that it is the disability we are trying to hide, not just the RA.
Disability makes people uncomfortable. I don’t know if it’s the “there but for the grace of god go I” mentality or ignorance or even the fear of “catching it” that makes people avoid the subject or the people who have the disability but the fact is, they do. Because our problems make others feel uncomfortable, we tend to keep our mouths shut. Polio victims were historically taught to hide as much of their disability as possible. It was frequently possible to pass as “normal” and to overachieve in order to get people to accept them. FDR would never have become president if it were widely known that he couldn’t walk. He never allowed anyone to photograph him in a wheelchair.
Now that I have RA, folks that are used to me overachieving and doing everything for myself have a really hard time accepting that I am now using a wheelchair instead of walking on my crutches. They tell me that I am getting lazy and de-conditioning myself. They do not understand when I tell them I have RA because all they hear is Arthritis and that means nothing to them. Instead, I tell them that I have an auto-immune disease that is attacking me. This, they seem to get. When I am asked why I’m not drinking, I tell them that I’m on medication that stresses my liver. They offer to buy me a drink the next time because I’ll be off that medicine by then.
It isn’t that I’m embarrassed by my RA, it is just that it doesn’t seem worth the time to try to explain it to family and old friends because they just can’t put it together with who they want me to be. One solution that I’ve come up with is to make new friends who do get it. My arthritis water class is the best support group ever!
Thank you, Kate. Great ideas.
Hi RAW,
Never knew Lucille Ball was a cohort in our collective aches and lumps! Did anyone see her in the Three Stooges episode?
I remember noticing James Coburns hands some time ago in movies and thinking that it must really hurt… now I know that it truly did. My hands are getting a little bit “paddle(y)” as I progress battling RA.
It’s good to know I (we), are in such fine company!
Keep fighting fellow RA’ers!
Sincerely,
Bob
The reason that I didn’t tell people is because the few that I did tell basically made me feel like a looser, like a failure and a complainer. A few people said to me things like, oh yeah im having a bad day too, i have a cold. Really, like a COLD or ALLERGIES is anything like AS! Plus being as young as I am people don’t believe the severity. BUT I have been very open and very vocal and have corrected people when they have misconceptions. Now people are willing to help me or are understanding when I can’t do something. Less angry and disappointed friends too.
RA doesn’t own me, but I won’t hide from it. Information without obsession is the key.
As a newly diagnosed and hopefully a soon to be “warrior”, I have been telling everyone I know about RA. My husband finds my “enthusiasm” for the disease quite amazing, but of course he’s a bit bias. 😉 I’ve been telling Family first, then friends and now my colleagues at work. I was amazed today to find out one of the guys I work with KNEW about RA. His mother and his sister have it! It was nice to be able to talk to him and not get the “glazed” over look as described above. While it was great to encounter someone who could somewhat understand, I refuse to not make my RA know to those around me. I try to make at least one person aware of exactly what the disease is and it is NOT something you get as you get old. I’m 45 AS IF I am old! :o) Thanks Kelly for the Lucille Ball info. Quite interesting.
Wow, what an enlightening post and discussion.
Why do I keep RA private in some circumstances? For me, three words come to mind, and they’re rooted in fear. I’m afraid of reactions of (1) disbelief, (2) judgment, and (3) rejection. I guess that says more about my own personal insecurities instead of anything about others.
So where does that fear come from? Well, partly from a decade of seeking a diagnosis for painful, real symptoms, with doctor after doctor saying “All the tests are normal,” “You need to exercise 30 minutes every day,” “You need to get out in the sun,” “You need to follow this diet,” etc., handing me some generic handout and a bill, and sending me on my way.
And I just wanted to scream, “You don’t understand, you’re not listening, I have real pain and real symptoms and they’re caused by something real. Please help me find out what it is!”
The fear also came from prior work situations where coworkers thought I was faking illness when I called in sick. One former coworker said, “You call in sick one day and then the next day you come to work looking perfectly healthy,” and “Yesterday you said you hurt all over; how do you get over the flu in one day?” Glances exchanged between coworkers spoke volumes.
I am slowly learning, though, that advocating for myself can sometimes be a very good thing. I have found a few trustworthy friends and coworkers who truly understand and truly care, and – FINALLY – doctors who believe me when I describe my symptoms. I am so very thankful for these people in my life.
Kelly, I’m also thankful for your blog and the input you receive from others. The validation and understanding here at rawarrior.com helps me become bolder and more informed when advocating for RA awareness.
I am up and open about it. While RA does not define me, it is part of who I am. I am also a wife, a mother, a teacher (yes, still in the classroom) among many other things…I am a proud arthritis warrior….and I will fight it kicking and screaming and I refuse to be beaten! 😉 Yep, I am a sassy old gal!
Way to go, Amy. 😉
I’m open about my RA and I don’t try to hide it. But I am sometimes daunted by the feeling that people think I’m faking the pain. I understand why they might think that, given the way RA symptoms sometimes hit suddenly and then disappear just as suddenly. If I weren’t the one with the disease, I might feel the same way.
There’s no easy answer for this. RA doesn’t embarrass me, but it does frustrate me. My family is so used to my having the disease that sometimes they don’t seem to care. That can hurt, but I know, too, that they do care. They just get tired of dealing with it, like I do.
As far as work goes, I can understand trying to hide the disease. Unfortunately, if the flares are too intense and come too often, there’s not much way to conceal it. Sick leave becomes a problem.
I just hope that one day “they” will find a drug that either cures RA or puts it into perpetual remission. Thanks for the post, Kelly. It’s a good question but one that has many different answers.
Wren, well stated points. Yes, as Kay said too, if you have the results of years of RA (or are always having flare), it is hard to hide. Like you, I neither hide it nor try to tell everyone; and this struck home: “daunted by feeling people think I’m faking.” I’d be perfectly satisfied to hide it from strangers, if I could walk right or get out of my car gracefully, etc.
I am being more open about RA lately and I have had RA for five years. However, people get so hung up on the “arthritis” part of the name. I SO wish RA had a better name. I am only 35 but look younger. People just don’t think that I can actually have this disease. Even my own brother doesn’t get it. He asks me every so often, “What’s the matter?” & “Why do you have those bumps on your hands?”
DIDN’T YOU GET THE MEMO?
Most of the time I don’t want other peoples pity and I don’t want to be defined with my disease.
People know I have RA, I had a emergency bracelet made – I thought I have to wear a tag in case of emergency for my asthma, I had a gold medic tag bracelet made that says RA & Emergency meds, so if anything happens, the emergency crew will know to look for what meds I am on, I mean not being a smart arse, but I have had a asthma attack followed by a huge RA Flare, I was just glad I was at the ER when it happen, so when people see my bracelet, ask what it is, I tell them, I have a RA, it is a autoimmune diease…. dumbest question I ever got was one person who looked at me and said, Oh is that like having HIV, I just smiled…..
I agree with Kate, I stay quiet about my RA as I hate to be perceived as disabled although having started a new job recently and really struggling with it, I am beginning to realise that I really can’t do all the things that people without RA can. My RA is not invisible as my hands show it and my shoulder is often too sore to move freely. I’m single and I think that also has something to do with it, I know that if I was in a settled relationship I would probably be more open about my RA but as it is I do not want to put anyone off before they have even had a chance to know me…..sounds really shallow I know and selfish but I just want to be known for being myself and not for having RA. If RA were truly invisible and didn’t involve joint replacements and deformity, obvious pain and a continuous struggle to lead a ‘normal’ life I think it would be easier to talk about openly without the fear of being written off as someone that can’t live a ‘normal life’.
“If RA were truly invisible and didn’t involve…can’t live a normal life.” That’s a big “if,” Libby. Made me smile. When that happens, maybe we won’t even know we have RA.
Kidding aside, very good points.That is the struggle in a nutshell: trying to deal w/the consequences of the disease on everyday life while coping w/ others reactions to what they may perceive as odd/invisible disability.
Hope the new job is going well. :chic:
hy sometimes i hv another emotion also…..
i feel PROUD.yes, actually none of my friends know abt my jra.n i know its not a good thing to be in pain. but when i score maximum in exams sometimes despite all this, that really makes me feel proud that i hv not let myself down. bt even if i score less,my parents never complain or make me feel low.thats so good in them…
Personally, the moment I FINALLY got a diagnosis I was ready to tell the world that it wasn’t ‘stress’ or malnutrion or whatever else they self diagnosed me with…I was happy they would stop suggesting the vitamins or other remedies. Well, at least I thought. I was pretty upset to realize no one knew what RA was and I found myself constantly explaining it. I, like Kelly, decided to try and do something about it, to change the understanding of autoimmune arthritis through our new nonprofit forming. And, for me, telling everyone and working with the Arthritis Foundation and other organizations to rebrand the disease is making a difference for me. But I’m also a college teacher, so wanting to educate is something I enjoy and want to do 🙂 . I can totally understand how we all, RA or not, have individual personalities and therefore will have unique ways of dealing with it. Whatever works for you, stay with it, whether it’s telling or not telling. But, Kelly, I think your question got some great responses and provides a lot of great reasons why we choose or not choose to tell people. Successful and insightful discussion! 🙂
After reading the post (as a debate forum ) I know I have RA and I know today was one of *those* days, there really is no one person who can read or understand what the pain is like, trying all the different combos of pain relief, symptoms from joints that are clicking when I walk- I can hear myself coming before I arrive, I can feel the pull on my neck from straining so hard against the pain in my shoulders today, call it the invisible pain if you like, even the rheumatologist I am seeing here in Canada holds my hands in his looking for signs of the damage, he orders x-rays and blood work instead…. I live in a small town where I need to await for a specialist to arrive so I can visit him at the local hospital on a Saturday and hope with all I am that he will arrive at some new conclusion other than the ones I have been given. And nothing is a foregone conclusion other than the fact that I have pain beyond all reason, I want to sleep it away, thinking that a good night’s rest is the best med of all. I have a husband that has been with me every step of the way, how he listens everyday to what I am feeling goes that one step better than any person on earth. But even logic I share with my husband has to be lost on the words I try to find to explain what I am living with….. to think that people could take a open forum and use it to express anger is shocking to me to say the least, Kelly you have taken the first steps to allow people to see the logic in this disease, for that I thank you, I won’t question any forum that is here to aid and not to demise the strength of others hidden pains and expressions. I go silent, the pain, the destruction, the fatigue, the over thinking the disease of immune disease goes back and forth… I have had some really good weeks, and then there are the days like today, the cold outside forges on and the RA strides in and takes over when it so desires, it is not embarrassing, it is only hard to describe to others who cannot see the real damage that RA constructs on people, and what it leaves behind in loss of limbs, emotions and sleepless nights. I won’t go on, you get the drift, Merry Christmas people and Ba-hum -bug to RA and the silent lives it destroys.
Kelly,
Your blog is absolutely wonderful and as I am finishing my first year with “polar bear” type RA I wanted to thank you for sharing, for working so hard to glean information to help those of us struggling with RA. I have always been an active person and as 60 approaches and I reevaluate the new goals in my life. I can honestly say I am thankful for you and your efforts and the medications. “The wheelchair in the mirror is not as close as it once appeared.” Blessings to you and yours this Holiday Season and always
Thank you, SetterMom.
Merry Christmas to you too. :present:
When I read the word “shame and Ra in a previous post it struck me hard. I felt like NO why should I feel shame, will people look down on me, I didn’t cause this to happen. Shame is a very emotional thing for me and I think I took it wrong. Let’s just say I have issues with shame rooting back to early childhood. I’ve contemplated this issue since you wrote this post on Friday. Coincidently, I had to go to my husbands office party that night and feel the sting from other peoples words or lack of words. We play a big part of getting these undesirable responses. I think we have to become experts at how to respond to people about our RA, another part of our becoming experts on RA. Some people choose to say nothing and avoid all repercussions. I want people to know more about it, but not at the expense of my well being. So I plan to figure it out, if at all possible. It was a very helpful post to me and reading how others deal with this. Thank you Kelly, I needed this.
Ronda, let us know what you figure out as an answer. I do not have it yet. I am just very private about RA around most people for some of the reasons stated above. I especially do not want to discuss it with those who have shown me that they don’t believe it is a “real” disease or that we are just exaggerating – those who, in the privacy of my house, I call “RA atheists.” That just helps me laugh about their perspective. :razzmad:
I am pretty quiet about my RA….I hadn’t put a lot of thought about it until now but as some people have mentioned I hate/fear the responses that I get when I tell people: “But you’re too young to have arthritis.” “So now that you’re on treatment you’re all better right?” Have you tried…?” “I have arthritis too.” I also don’t like pity. My father in law has RA even and now he asks me how I am feeling every time he sees me…I appreciate that he cares, but I don’t know how to respond. Honestly? Most of the time I feel horrible but that’s not a very inspirational answer. I have a similar struggle with most people…they don’t know how to deal with pain…evn my husband and I are still struggling with how to deal with me in constant pain as it is very hard for him to see me that way. I aslo do not want to be perceived as a whiney or as wimpy. I have always been a strong, tough, athletic person and when I am having a bad day I don’t want people to see that- it feels shameeful and weak to be stuck resting when I want to be running or riding my horse or able to do anything else. So some of it is internal- I used to be able to do more and now I can’t and that doesn’t feel right; since no one can SEE a reason for it its hard to justify even to myself. And some of it is external- I don’t like how people respond and I don’t have the energy to or emotional ability to handle it all the time.
Valeska,
Very well said. Thank you for this honest picture of our dilemma. So much of what you write is what people tell me all the time. Common themes.
I have gotten to the point that I usually just say, “Ok” if someone says, “Oh, hi, how are you?” Only other RA’ers actually ask about my RA or pain, except for one friend & my kids. I know they’ll listen, so I tell them whatever they want to know. Even the doctors make me feel embarrassed, so I don’t say how bad it is. Not sure why yet.
I think any chronic disease is like a scarlet letter, really. You do things differently to adapt to the pain, and all of a sudden you’re judged for it… sometimes even by yourself. I have fibromyalgia and liver disease and am 22 in college – talk about scarlet letter! I even get the ,”But that’s not possible because you’re so young. Did you drink as a kid to get sick?” Umm, NOOO. I have been sick with liver disease since age 5 and I have never drank alcohol in my life. Lay off it people, you know? There’s always going to be those people who say those things or give those looks or form those unrealistic opinions, but we need to rjust remember we’re stronger than them and most of the time, they’re doing what they think may help. And if it’s that bad, stick up for yourself. Politely say, “Stop asking ____.” or “The reason I’m ____ is REALLY because _____ So there.” I’ve had to do things like that before and in the end your friend or loved one respects you more for it. God gives us extra strength because without it, we couldn’t live with disease and still keep our heads up even for a minute. It’s hard. {{Hugs}} to my beautiful new friends.
Only about 10 people know I have RA- I’m still not entirely convinced sometimes!
I am very private person and do not tell people/ acquaintances about mundane things happening in my life, let alone a significant disease. If someone asks me I will tell them the truth but I will not go out of my way to include it in conversation. It took me a while to tell my Dad and Grandmother!
Another reason is that there is not much anyone can do for me if they do know so what’s the point?
Thanks for all your hard work Kelly! Some days FaceBook is a gift!
I’m that way too. I avoid telling strangers or new neighbors, but it is hard because I know they wonder why I don’t/ can’t do certain things. Does that happen to you?
I do wish some closer people understood what it means when I tell them, but they don’t – so I usually give up. Maybe they will read the blog someday! 😉
Hi Kelly,
I am a bit bipolar when it comes to my RA. Sometimes I am open and other times I hide it. I don’t want to be defined by RA. People say a lot of ignorant things, they do lump it together with osteoarthritis, as others have said in these comments. Then there are the people who want to tell you why you got the disease. I have one close family member who is telling people I have RA because I didn’t participate in team sports. Thanks! I am tired of talking about it with outsiders. I have no problem talking to another person who has it, or my husband and children, or even people who are genuinely interested. Most people are not.
I still have a hard time not thinking that I am lazy when I have to nap. I am sure other people think that I sleep too much!
Okay? Team sports? :p if only I’d known…
I understand. I don’t intend to hide it either, but I think as a defense mechanism, I try to appear “normal” around people that I know will hassle me in those ways.
I agree with you absolutely!!
The problem is …at some point you’re going to have to confide some of the yucky details that you’ve been keeping from your family.
I’m the strong type -I was in a store with my wonderful supportive 25 year old daughter recently, and she put her arm on mine as we were going up the stairs- she could see that it was difficult for me. And I stupidly brushed her off and said I’m fine. I apologised the next day, but,darn I felt like my grandmother!
I’m having trouble coming to terms that I’m going to need someone to help me in the future. I’ve ALWAYS been the caregiver. Not fun.
Maybe you can be the caregiver and receiver at the same time. It’s hard to make this change, but your daughter sounds wonderful. At least she is reaching out. :heart:
I’ve leaned on my sons’ and daugters’ arms for years. They know how to steady me w/out touching a joint so the funny thing is, I don’t want help from anyone else because it will hurt.
Hi,
I was 26when diagnosed with both RA and Hashimoto’s hypothyroidism. The hypo having triggered the RA. Apparently I had the hypo for about 9 years and it was undiagnosed. I lived in Brazil and went to several docs with several “unrelated” symptoms. it took a Danish to GP to say “well, it is pretty obvious you have hypothyroidism. I went there when the pain in my joints became unbearable and everything hurt to the point of taking about 30min to walk from my bed to the shower (2m). I then started being treated for hypothyroidism and for my RA I went to an accupuncturist. at the time I was doing my MSc in applied Economics and Finance. A 2 year course took me about 4 years to complete and my grades stumbled to the point that i barely passed. I went from being a National Honour student to what I thought was a complete loser. I could no longer play basketball, rugby, jog, cycle and even swimming hurt.
After a short while I decided to finally start on a macrobiotic diet, which my father insited would help. That helped… but i also think getting treat for my thyroid. Although my thyroid hormone was normal, the joints in my body hurt. A week after starting the macrobiotic diet, which was 7 days of brown rice to clean my system, I woke up pain free and was able to walk without my walking stick or assistance. My stamina gradually returned.
Unfortunately, the joints which were already damaged still are damaged, but the RA practically came to a standstill. My right elbow still sweels up and I take some steroid injections for it (every 6 months). I still can’t play basketball and jogging isn’t a good idea and I have osteoarthrosis on my left foot. But I can cycle. I can’t swim because of my elbow.
However I still feel like a loser when I try to explain that I am tired and some of my joints hurt. Even my own husband looks at me as if I were making up excuses because outwardly I look fine. Generally I try to say “yeah, I can do that.” But lately I feel the tiredeness getting worse and some joints going a bit wonky. I then stumbled upon your blog and realised that I could be far worse and what if it does happen. So I am trying to take better care of myself while I can so that I can stop this thing from taking over.
Oh, and I now live in the UK and my rheumatologist is Dr Allard, a professor at University College Hospital in London. He is amazing! He is understanding, listens and I can bombard him with questions and he practically is teaching me about many aspects of the disease. It is also fun when students come to watch him practice and he basically treats me step by step and shows them how, why, feel here and there.
Thank you for creating this great website and keep well.
x
Becks
I am so impressed that this very relevent question has come to light. As a 13 yr. old diagnosed with adult onset RA 30 plus years ago one of my first feelings was of shame. I wanted to crawl under a rock and hide until it was over. I knew what this disease was about, in a sense, because my mother had RA & Lupus. I witnessed her own humiliation when people called her out on it making ridiculous comments about her hands etc. I felt very protective of her.
Even though I appeared well (not in body) my Rheumy stopped me from attending my gym classes, had me take a little yellow school bus meant for mentally challenged kids and was hospitalized so many times in middle school I can’t even begin to count. So hiding was not an option! Everybody
knew something was wrong with Louise. ARTHRITIS… that is an”old folks illness” that I even believed! Humiliated and embarrassed I kept a lot to myself. However thanks to my strong will and determination I continued to push for independence. My close friends couldn’t possibly understand
how lonely and left out I felt.
Dating didn’t enter the picture until university which took me to a whole new level of fear. I was terrified of rejection and embarrasment. My hands told the truth as well as painful swollen knees which made slower walking noticible.
So I kept my hands out of sight and forced myself to walk as normally as possible. I sucked up all my pain. The question that floated in my mind since I was 14 was “who will marry me”? In my final year of Social Work I met the man I would marry a couple of years later. So tired of hiding, on that first date I took the best risk of my life by telling Kent straight out “look see my hands I have RA it’s not pretty but this is what I have” he looked at me took my hands in his and said “so what?” We’ve been married for close to 24yrs. Through many trials and tribulations we have made it.
The torture tests of having to endure other people’s ignorance continues. However as I age the good news is I am more able to shrug off other peoples rude comments with a chuckle and occasionally enlighten those who are genuinely interested in learning.
The truth is demonstrated well with stories. Thank you for telling your story Lousie. I hung on each word waiting to see how it would turn out! If you’d ever like to, you can send it a longer version w/ a photo of you hands or whatever and we can post it on the Story pages.
I think its because EVERYONE you come across has a touch of it in their (&%$^) no info is out that says OA and RA are diff.. Its us who need to explain to dead ears. People today still tell me im faking. lost a gf of 20 years saying for me to just get off my ass and it will go away.. Im tired of it. I just stay to those who know and refuse to tell anyone new because they DONT listen
Shannon, I’m sorry about all the stupid people & jerks who refuse to listen. I’m sorry about your friend being so insensitive – I have been thru it too. Maybe if we can stick together we can have more success getting people to listen – I know I read comments like yours aloud to my kids & say “See, I’m not the only one!”
Actually it is sort of nice that new commercials are coming out (although they could give better info) about the drugs available to us. At least with the advertising, people may recognize that there is a difference in diseases (RA & Osteo), but really the only folks that matter to me in the caring department are family and friends, in that order. For the most part my sons and daughter in law are very supportive and are amazed when I can keep going. But I push too hard, like everyone here, which leads to people wondering if there is really all that much pain.
This morning I am still suffering from the after effects of a week in China. Air travel is not the greatest gift to suffering, especially being a big man in coach. The new job doesn’t know about the disease and I am hanging on to that piece of info as long as possible. Luckily I can do my job, either at work or at home if necessary. In that respect I can hide things a bit better than some of you.
My prayer for the holidays is that neither of my sons come down with this disease. Seems to run in my mom’s side of the family. If I can take thier pain I will gladly do it, because we all know how weak the younger generation is.
Peace to all,
John
Hi John,
Good point about how hard we push the pain – people cannot see that every step is like the end of a marathon that most people would find overwhelming.
I hear that a lot about jobs / secret RA. I hope you can continue to work for a long time.
This is in response to the posts by Kim H.
Kim H, I can understand what you mean. I have recently started visiting this site and I really enjoy it, but I get a similar feeling sometimes from some of Kelly’s posts. I was talking to my Mom just the other night about RA Warrior and mentioned to her that I liked the posts, but that there was something about the tone of the articles that I didn’t agree with and that made me uncomfortable.
Again, I would like to stress that this is a great site and I agree with a lot on here.
I think the big difference here, is that for the two of us, RA is not a crusade or a passion. It’s just a difference in attitude.
Still, I am grateful to this blog and other sites like it for waving the flag for the rest of us. There does need to be much more RA awareness out there and no one ever changed anything by keeping quiet.
Is there a connection between ONegative blood & RA
I don’t think it’s just RA that people hide. My husband tries to hide his Atypical Parkinsonism, because he fears losing his job. He warned me about exposing my illness to my employer for the same reason.
There are days I can’t do my job to the best of my ability because my body just won’t allow it. How do I explain this without telling my employer that I have RA Symptoms and that they really have no idea what’s wrong with me?
I am a very open person and I have told my employer about my illness… without an actual diagnosis there isn’t much help for me. So I wait and function the best that I can.
Our current economic environment doesn’t help us be open. We are so afraid of losing our jobs, our medical benefits, our homes…
I am embarrassed to say I can’t… because I hurt too much or my body can’t do those things anymore or I am too tired. It is having to say I can’t.
I tend not to tell people because, unless you’ve experienced it, you have NO idea what it’s really like. One of my husbans’s friends told me that it was all in my head & if I would change my outlook, I’d feel better. I was so surprised, I just stared at him. Fortunately, another one of our friends, who is a nurse, was also in the conversation & she came to my aid and let him know that it certainly was not in my head! So now, I put on a happy face in public & never ever let anyone know how I really feel. They wouldn’t get it, anyway.
I have been diagnosed for 2 years now. It turned my life upside down. I had made some major long awaited life changes and after RA worked me over I was so defeated I wanted to hide from everything and everyone. So I did and have still continued to live like that. Only my family and closest friends were trusted enough for me to confide my secret in. I realize everyone will not feel like this, but I did. A friend told me about this site last week and I have felt so much better since it has come into my life. I don’t feel alone anymore, it’s so freeing to finally realize there are a lot of people that feel as bad as I do every single day. There are still days when I want to scream at people ‘there is a difference in RA and OA and I’m sorry but if rest would help, I would have been healed a long time ago!’ Then after reading the frustrations some of us have with the current RA med commercials – a light bulb went off in my head. Is it possible that the nonRA people in my world don’t know the difference because I’m too ashamed to tell them? So, yesterday I talked to a close friend and told her I was going to come out of the RA closet. She laughed and said she had never heard it put that way, but that’s a good description. I have decided that my body might not work very well anymore, but there’s nothing wrong with my voice! So, I have started being more open and sharing in a slow way with my facebook friends. I am generally a very private and reserved person, this new found voice might not last long, but if I can make one person see the challenges RA makes you face every hour of every day – it will be worth it. Thank you Kelly for giving us the safe place to cry, whine, rant and rave, and even to celebrate our challenges and victories. Now I am going to start on my journey slowly – but I have learned I can still get there even if I do walk slow – it just takes a little longer!
Dear Cheryl, I want to say congratulations in taking a big step. But RA is hard to talk about and most of us can only do it in small steps. It’s a struggle in my life to even explain to doctors and certain family members. I think it’s because I’m afraid I won’t be believed or understood.
I’ve gotten much better at sharing with my closest friends, some who have RA & some don’t & I agree that we can help improve awareness. However, I just don’t want any of us to feel pressured to do that. Just do what you feel ready to do. ♥
Thank you Kelly. I have taken a huge step in actually allowing myself to accept my diagnosis – it’s taken 2 years. It hasn’t been easy and I am sure I will rebel against the diagnosis again. I have always been very independent – it is still almost beyond my grasp to admit I find it impossible to open a bottle of water most days. Hopefully, I will find the courage to slowly, and I do mean slowly, share with a few people I have known all my life. I have only existed for the past 2 years – due to the changes RA has brought to my life and also the fear of not being believed and being looked down on because of my limitations. I have to admit, it’s hard for me to believe I can feel this bad 24/7 without relief – so why should someone else believe it? I know sharing such personal information is not comfortable for everyone and in the past has not been right for me. I just know that at this point in my life, today and maybe not tomorrow, I want and need to release myself from the self imposed box I have put myself in. I think I have taken the first step – and may not move any farther for a long time – but I feel I have had a small victory – and they are far and few between these days! Thank you so much for you concern, and I promise to take thinks slowly and thoughtfully.
You know, I’ve been thinking about the actors with RA, and I think they didn’t “come out” about it because they would not have been given work – motion picture work, even for the Tier 1 stars, is really hard, back-breaking work. The studios try to cut their initial budgets really close. So if there is a choice between an RAer or a non-RAer, who do you think they will choose? Yes, it would have helped if they had come out about it years ago – but they would not have had work, and so would not have been as good spokespeople for us. I’m not sure that came out right, but I hope most can see where I’m going with this.
Frankly, I’m not sure what kind of example I want them to be (or have been). I can’t do the work they did – does that make me “unworthy,” or something? Does it put the “Scarlet RA” on my breast? Some days I think I am or should be the wearer of a “Scarlet RA.”
And would the “Scarlet RA” help people understand? My “RA Chickie” tee and my husband’s “My Wife is an RA Warrior” tee don’t seem to help. People very seldom read them, and even less frequently make mention of them.
I’m for whatever it will take to “get the word out.” But like many others, I frequently don’t know what will be involved.
If I remember right, in the post and/or comments here, I talked about what a struggle this is for me. I know it was discussed at length on the 2 Rosalind Russell posts. I tend to shut down/ be quiet because I hate to be in the postition of insisting I have an invisible illness when someone (usually someone I wish would respect me) is treating me like I’m seeing ghosts.
But I will say that last week when Roo had surgery, I wore an RA Warrior Tshirt to the hospital. Everyone seemed to read it. The surgeon kept staring at it. I hope someone went to the site to check us out. 😉 As I’ve written many times, it will be an all-of-the-above answer and each of us will do only what we can each day, but we’ll win. Social media has made such a difference in just the last year or 2 – the bonds we make with each other to strengthen us in the fight – plus the amount of information and data that’s being produced by patients – it’s changing the landscape before our eyes. We’ll win because we’re right & RA won’t back down so we’ll stand where we are until we’re heard – a Horton reference, a very early post here.
By the way, I finally am reading the Out of Joint book on RA and shame is a big theme there too. As I hear is true w/ the Christine Schwaab book. When I perceived this shame theme and wrote this post, it made some angry, but the more people with RA you hear from, the more clear it is. We do NOT all have to put ourselves out there to advocate by any means, as I’ve written for almost 3 yrs – but it’s ok for us to talk about the shame RA can cause, so we can try to help heal it.
I used to keep my arthritis relatively hidden for a few reasons:
1) I had not yet fully come to terms with what the illness entailed myself, and didn’t feel like I could deal with others asking me questions when I had no idea how I felt about the whole thing myself.
2) I felt like arthritis was an old person’s disease. I’m sure almost all of you have come across the “but you’re far too young to have arthritis!” card, as the misconception seems to be incredibly common, but when I was first diagnosed at 13, I really felt like I was a freak for having something that would be more suited to my grandmother.
3) I was terrified of people telling me that I was making a big deal out of nothing, or that I “look fine”.
Nowadays I have no qualms telling people about my condition. I suspect this is a large part of the reason that most of the people I associate with regularly are either medical students, nurses-in-training or other people with chronic illnesses.
These are the people who won’t be bored or get the “glazed” look someone mentioned above. And above all, they know I’m not exaggerating, nor am I just lazy or attention-seeking.
The upside of this is that I now have some truly amazing friends, and can be honest and open with everyone.
The downside has been that I’ve been accused of lying about my condition for attention a few times. I’ve been told I’m clearly not sick because I look perfectly healthy (little do they know I got up at 4am to take Brufen and spent three hours getting myself dressed and prepared), or that no one with JRA could possibly lead the independent life I do (they haven’t seen me on the days I can’t get out of bed).
People can be very cruel about thing they don’t understand, and I think that, more than anything else, is the reason some people choose to keep diseases like this a secret.
They’re invisible, for the most part, and people have this horrible tendency to assume that if it can’t be seen, it can’t be serious.
I’m only embarrassed to talk about it because I don’t want to sound like a whiner. I am otherwise able-bodied and my job can get rather schleppy and physical at times. So for me, at 29 years old, to tell my 50 year old coworker with a bad back, that I can’t do the work, sounds pretty lame and pathetic. I mentioned that I was having a hard time with the work before I was recieving treatment, and I just hated what was coming out of my mouth. It’s not even doing the work that’s hard, it’s the other 16 hours of the day that I’m knocked out in bed convalescing before I have to go back.
This site is like a warm, cozy blanket for me. It is so wonderful to read the thoughts and experiences of others doing the RA fight! It makes me feel like I’m not alone in this fight.
I HATE talking about having RA for almost all of the reason others have posted. “oh, I have arthritis too..have you taken supplement x or vitamin y”. Oh, you’re lucky that you’re not deformed, you can’t be hurting too much. Well, you look fine to me…Yep, I’ve heard them all. Why bother anymore. I think RA is such a private disease because so many times it’s the invisible things that are the hardest. Who can see brain fog or the tiredness that can overwhelm us. Who can see inside our bodies and know the back pain, shoulder pain, sternum pain that we experience. I have a wonderful, loving hubby, but I know that he even tires of it at times. If your own family tires of hearing about RA, what makes us think others would even care to begin to understand. It may not be right or fair, but my mamma always said “if you want fair, go to Indiana in August.” I guess having RA is just a lonely business no matter how you slice it. That’s why it’s nice to have a site like this one that one can hear other’s struggles and understand we’re not alone.
Nothing at all fair about RA, but I love your mom’s joke! Listening to each other is the best we have to combat that loneliness that comes with RA. I have the sternum pain too – and it makes me feel less alone just to hear you mention it. Thank you for your comments!
I think that hiding your RA disease is more about not wanting attention because of your pain. i notice that when i mention it when i am having a flare-up that folks immediately start to “commiserate”. i am not personally comfortable with this kind of attention so i usually play down my pain, etc. sometimes i get “caught” in my wrist and knee wraps , with my cane and in a great deal of pain and once someone has seen me this way, they give you the “sad eye”. so in conclusion, i am certain that the go-getters like lucy and kathleen are not up for that kind of attention!
Agreed. I don’t talk about it because I don’t have the energy to explain it all.
Renaming it Rheumatoid Disease and making the public understand that having severe RD is a severe problem would be wonderful.
My meds so far have worked wonders controlling my symptoms,methotrexate and enbrel and I’m lucky to have them.
But then no one knows I’m sick. And when I do tell them they just look at me like,yeah right.
I say I have RA they suggest Apple Cider vinegar, and I even think that they could be right ,for a few hours anyway.
This disease is all systems (rheum means river I believe ) as well as psychologically,though subtly,damaging. Yes I’m depressed because of it. And denial makes me attribute it to anything else. That and going to see therapists who are also happy to ignore my physical illness, based on how I look,which is not sick.
Thanks for the RA Warrior blogs and all the effort and work you do and to anyone who has the nerve to say they have it! Thank Gid for this place.
It’s a scarlet letter because it’s called Arthritis and people just think you’re a nut for making any kind if deal out of it.
I’ve had it for eight years. I’m just NOW admitting it’s kind of a problem. kind of.. ? Others have been so good at ignoring it they convinced me.
Lately I’ve felt “kicked by an elephant ” and my pissy behavior is beginning to need some explanation.
At least let people know that I have Rheumatoid Disease.
There.
I’m out of the RD closet.
Geesh.
Thanks again Kelly and all!
The simple truth is: Most people DO NOT have the ability to empathize because that would mean they would have to be unselfish for a moment and things would have to be about someone other than THEMSELVES. RA can be a living hell, and it does DEFINE me when I can’t leave, can’t walk, hurt like heck and simply put, feel tortured. Get use to it. People just don’t want to know or hear because they don’t care. Gladly, there are sites like Kelly has made so we can at least stay up on current research, meds and learn from the experiences of others. Also, there are varying degrees of disability in RA. Some (like someone I know) don’t have to take dmards, biologics, prednisone, and can even plan ahead without worrying if the horrible flare will prevent them from walking or driving that day. They don’t want to hear you talk about how hard RA is either. Get use to it. I know it hurts, but people will only feel your pain and understand if they have a spirit of compassion. So what if they don’t want to listen. You are better off without that kind.
I believe we MUST advocate for a name change to Rheumatoid Disease. RA tends to be confused with OA and they clearly are not even in the same ballpark. I belive that having a positive attitude is critical as is educating the public. I have Sjogrens, Hashimotos and some form of bullous pemphigoid or pemphigus vulgaris (seeing a specialist on August 8th!). I was VERY embarrassed by the skin blistering disorder which looks much like a bad case of shingles but is not contagious. Now I realize that I did nothing to deserve these illnesses and I’m not going to allow them to steal my happiness.