Comments on: Rheumatoid Arthritis Disease May Be the Scarlet RA

By: Cecilia

Cecilia — Fri, 16 Dec 2011 01:14:21 +0000

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!

By: Kelly Young

Kelly Young — Tue, 13 Dec 2011 01:22:19 +0000

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!

By: dldg

dldg — Tue, 13 Dec 2011 00:30:57 +0000

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.

By: MW

MW — Thu, 03 Nov 2011 07:07:25 +0000

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.

By: Karen Slagle

Karen Slagle — Wed, 12 Oct 2011 05:56:30 +0000

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.

By: Karen Slagle

Karen Slagle — Wed, 12 Oct 2011 05:47:59 +0000

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.

By: Eevee

Eevee — Mon, 05 Sep 2011 12:01:36 +0000

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.

By: Kelly Young

Kelly Young — Tue, 30 Aug 2011 20:45:05 +0000

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.

By: Kelly Young

Kelly Young — Tue, 30 Aug 2011 20:41:49 +0000

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: Turtlemom3

Turtlemom3 — Tue, 30 Aug 2011 19:23:04 +0000

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.