RA: The Loser Disease

Let's face it; rheumatoid arthritis is kind of a loser disease.  I mean, if you have to get saddled with a disease, getting a popular one would make some things about the whole ordeal a little easier to take. For starters, when you told people what you have, they wouldn't: A. stare at you with a blank, slightly puzzled expression while trying to emit sympathy even though they have no idea what you just said or what that is, B. easily dismiss it because they have it, too, in their knee, their ankle, their shoulder....ahem, or C. tell you that now is the time to have RA thanks to the superdrugs out there, and besides, it's not like it kills you. (Never mind the fact that it painfully eats your joints, makes you feel like Death's best friend, and can land you in a wheelchair.)

If you have RA, chances are you know what I'm talking about.  Just once, I'd love to get an email or a facebook invite from a friend asking me to a benefit for the disease I've actually got instead of some other one.  Wouldn't it be lovely to be able to take yoga or pilates classes especially designed for people with RA? How comforting must it be to go to the bookstore after being diagnosed and see rows and rows of books all about your disease. Multitudes of books telling you what to eat for it, how to exercise for it, treat it and survive it. How to laugh about it, talk about it with your partner, your kids, your doctor, your boss, neighbor and that random person you bump into on the street.  When I got diagnosed, I was so dismayed, not only to find out that I had a disease (obviously), but also to find out that I'd gotten stuck with a crappy, lame one that nobody seemed to know or care about.  Restless leg syndrome had more books sitting on the shelf of my local bookstore than did rheumatoid arthritis. Nothing against restless leg syndrome, but seriously?

Part of the reason why having RA is so damn difficult, aside from the symptoms itself, is because, chances are, you didn't know what it was before you got it, and now that you have it, no one else knows either, unless they happen to have read a lot of Jane Austen. So not only do you get RA, but you get a kind of weird inferiority complex, like 'my disease isn't as good as yours since it doesn't have any bling, good merchandise or Lifetime movies about it.'  We don't even have a celebrity as a spokesperson. Kathleen Turner finally revealed that she has RA in her recent biography, but sadly, it didn't make a big splash, and even if it had, next to all that juicy backstage gossip, her struggle with RA took a backseat in the telling of her story. 

Sadly, for those of us who got stuck with RA, it is neither popular, well-known nor full of faux-glamour.   Why do some diseases seem to capture the national empathy spotlight while others are relegated to the back of the bus?  It's not just about the mortality rate, because heart disease is the number one killer of women, but breast cancer is a much more identifiable, better-funded, and well, popular, disease. It gets all the attention. Shelley Lewis, author of the sharply funny Five Lessons I didn't Learn from Breast Cancer (and One Big One I Did), writes about this phenomenon in her book, and it got me thinking. Why is RA at such a disadvantage?

For one thing, the fact that it won't kill you is a drawback in terms of being able to dramatize it in the media. In terms of having this disease, it is a really big plus, but compared to personal stories of struggle and triumph with illnesses like cancer or Parkinson's, it's just not tragic enough to pull on the heartstrings of the public (so far, at least). And, since it is a chronic disease, there is no 'Shout from the rooftops, I SURVIVED IT" moment.  There are only smaller, harder-to-portray moments of glee and glory, such as 'HOORAY! My drugs are working! I don't feel like utter shit today!' But RA isn't ever really over, it's just dormant at times-- if you get lucky, that is. 

From a publicity standpoint, RA is a hard case to crack. Its effects are often invisible from the outside, so most of the time, it goes unnoticed.  Even in my sickest days, no one was ever going to look at me and think I was unwell, so how do you get people's attention about it, particularly on a large scale?  I don't think there are any colors for an awareness ribbon left, though I suppose we could move on to patterns. Maybe RA could be polka dots or a perky Scottish Tartan? The idea of having a big walk for RA strikes me as being a little flawed (Arthritis Foundation does have one) given that many people with RA either can't walk, can't walk without assistance, or can't walk for long periods of time without suffering some real, no-holds-barred pain.  I know I can't. I could get through it, but the thought of walking 5K, even for a cause so directly related to my well-being, doesn't exactly inspire me to go and sign up for one if I'm being really honest.

So, where does this leave all of us?  I'm not sure I have the solution.....yet!

If you have any ideas, leave a comment!

Comments

[Katherine]

Hi Sara-- I've been reading your blog for a year now and just read this post. I feel like cheering! Thank-you for giving voice to the feelings that a lot of us have about this disease.

I'm 31 and was diagnosed about 4 years ago. If I hear that I should sit in a hot bath or take 2 tylenol one more time, I may start screaming! Sometimes I wish that all of us young people with the disease could get together and show people that's its not just old people who are afflicted with arthritis!

[Sara]

I'm working on a few ideas...I agree. It's time RA got rebranded! Thanks for leaving a comment-it's great to know who all else is out there and in the same boat. Go take a hot bath, my ass!

[MER]

Thank you for this post! I could not have said it any better. Diagnosed at 25 and still pissed off at 30 but dealing with it as best I can. So glad I found this site!

[Sara]

Hi Mer-I'm glad you found me, too!

[Ms. Levity]

Funny you should mention that your local bookstore had more books on Restless Leg Syndrome than RA... because I just noticed the very same thing at mine! I really could not help but laugh about it.
I resigned from my job as a professional cook only yesterday due to RA. Shockingly (or maybe not so shockingly), my boss (and one-time friend) did not seem to comprehend the fact that I just could not hold a chef's knife any longer or stand up for hours on end without fatigue or extreme pain (which I normally do not complain about any way). I had always been there for her throughout all her trials, and, yet, she literally turned her back on me and offered me a leave of absence without pay. How caring! Oh, well... I resigned on the spot and can now get the rest I need, enjoy time with my family, and not have to worry about my chef's knife flying out of my hand...

[sara]

Hi Ms. Levity-
What is up with Restless Leg Syndrome stealing all our thunder?
I'm sorry to hear that your boss was so lame and insensitive, but it seems like you are in a good place about it. I'm glad that you can take care of yourself and enjoy other parts of your life more and yes, also good not to worry about a flying chef's knife!
Thanks for leaving a comment.
Sara

[rachelb]

I am so happy I found you all! I'm 28 and have had RA since I was 19 and I can't tell you much these posts mirror my own experiences. No one has a clue what RA is and when I say arthritis they think I might just have creaky bones but oh, its so much more!

By the way, since I've been on better good drugs I've been able to do some Yoga and its really helped but I would love it if someone came up with a program for us RA folks.

[sara]

Hey Rachel-Glad you found us, too! In terms of yoga, i haven't put together a whole routine, but I have written a few things about it, including this article at RACentral with some tips and instructions for one pose, in case you want to check it out. I'm trying to work on some more to post eventually!
http://www.healthcentral.com/rheumatoid-arthritis/c/24582/68701/yoga

[Generic Viagra]

Excellent information but what cause Rheumatoid Arthritis and what is the treatment?

[sara]

Check out this posthttp://singlegalsguidetora.typepad.com/the_single_gals_guide_to_/2008/06/what-is-rheumat.html
for some more info about RA in general, and my links page also has a bunch of good sites with more medical information about RA.

[Amy]

RA can kill you, and can take years off your life. On average, the life span of adults with RA is seven years less than those without (otherwise healthy). It can affect both the joints AND major organs, such as the lungs and heart. And if the RA doesn't get you, some of the medications are so toxic, the diseases they leave you susceptible to just may. Not to mention the numerous infections you have to deal with every year.

While this is bleak, I can say that in general, I cope with my RA well. I love Enbrel and am thankful it exists. But your complaints are valid and I often find myself feeling the same way.

I spend a lot of time educating others about the differences between RA and OA-educating them about the effects of the disease AND the medications used to treat it.

Eating well, exercising when you can, and getting plenty of rest are essential. Do what you can and don't let it, or them get you down!

[Kristin]

I just found this blog after searching "Having trouble keeping up, Rheumatoid Arthritis". I read the entry, identified with everything in it, then welled up when I read the comments that followed.

For the first time since I was diagnosed, nearly 3 years ago now, I don't feel utterly alone.

Thank you for your eloquent, humorous and crazily accurate words. I am so glad I found this island of reprieve; where I'm not the only one trying to act normal when just keeping it together is often a herculean effort.

Cheers to all us young gals not going-it-alone with the Loser Disease.

[Valerie Caudle]

Hey!
I'am 48 and live in Texas I like the idea of purple polka dot ribbons.
I would wear it on my name tag at work,
people tend to look at you really funny when you try and live a normal life as you can with RA, and then tell them you have RA. Hey they can't catch it. I was diagnosed when I was 28. I went to pick up my son, and could not get my hands to open up to pick him up safely. I say keep fooling
the fools and live life to the fullist,
do what you can and want life is to short any way.
Love this blog, stumbled on it though.
Needs to be out known bettr.
LOL
From Jo.

[Valerie Caudle]

Sorry about the spelling, was in a hurry.

[Mandynjason104]

I am a little late in joining the posts...I'm 34 and just finally got diagnosed with RA after a years worth of misdiagnosis. So glad to hear it isn't just me...tired of feeling like no one understands how I really feel. My husband is the only one who knows when I am in pain, he is really sensitive to it since he has to lay next to me every night, tossing and turning in bed for an hour until I can find a comfortable enough position that does not hurt my shoulders, elbows, hands, hips, knees, and feet. I love the ribbon idea, and I am encouraged by all the posts on here!

[sara]

Hi Mandy,
Glad you found me. You are definitely not the only one going through this- as evidenced by all the comments here and there are now so many other great RA blogs and communities online. Take care-
Sara

[Dr. Pam]

You nailed it beautifully, except for the part about it not killing you. Mine, if left untreated, has a 5 year prognosis for Stage 4 Lymphoma, that's cancer to all you non-medical types. And, due to the core problem with the immune cells, Lymphoma is still a possible future of mine. Plus, the fact that my treatment is akin to doing a mini chemo treatment once a week. My hair is falling out, too, to add insult to injury. But the rest, you nailed.
Thanks for the article. -Dr. Pam

[Elizabeth]

Sara - we have a ribbon! It's blue and purple! Actually, it looks a bit closer to magenta than true purple. Check it out : http://wp.me/p16uvX-z
Cheerio!
Elizabeth

[Adrienne]

I'm a certified Yoga Nidra Facilitator. I would need to do a little research to create a class designed for RA, but I would love to. I'm located in the Boston, MA area.
Let me know if you're interested.

[Rikki]

This is exactly how I feel--nice piece. I think one way to "glam" it up like the big boys (breast cancer) etc may actually be to play up the death rate. Sick I know, but there is actually a death rate attached to the disease, people just don't talk about it. Severe RA not only attacks the joints-- causing people to become just as crippled as MS patients, and susceptible to things like pneumonia-- but internal organs causing RA patients to have a phenomenally higher rate of organ/heart failure. It is terminal, it's just that we linger for a longer time. Also, bringing greater attention to children with the disease may really help, as it has for things like type 1 diabetes. Because, let's be honest, children are cute, and sick ones always draw a crowed. Making kids with JRA a face for the disease helps show the human cost.

PS. I totally advocate the polkadot ribbon for RA awareness! :)

[Dee]

Mine also started in my 50's and I have found out some Pilates DVD's that may help you also: Pilates Complete for Inflexible People, Pilates Exercises for Osteoporosis, and Gentle Tai Chi. I also note that not eating dairy, beef, and sweets helps. Thanks for all the comments. I agree with all of you in that no one on Facebook posts this disease. It is deblitating. There are days I cannot get out of bed. And when I do, it is babysteps. Thank you all.

[laura]

Thanks for posting this article it makes me feel like I'm not an outsider like there are other people out there that understand.... Whenever I tell somebody about this disease I usually get the your too young to have arthritis.... It takes all I have not to slap them silly because out of everything I explained all they heard was that I'm 21 and the word arthritis.

[Sarah]

I just want to thank you so much for this! I'm 17 years old and had so many aspects of my life planned out - travelling the world being one of the main ones. A little while ago I was diagnosed and, although the doctor had a severe tone to her voice, it didn't sink in. It still hasn't to be truthful. When telling family/close friends, they all gave the same few types of reactions. The "Oh, that's awful...now let's talk about me" response, the "Ah well, it's not too serious! Could have been worse" response, or the most common of them all, "What on earth is that?!" Oddly enough, if you tell someone you don't know too well, they'll treat it like it's contagious. Even family don't seem to understand the pain that R.A. causes. I've got some exams that determine whether or not I go to uni coming up, but I'm struggling to write and walk up stairs, yet you never seem to gain any sympathy. You only get looks off people for overexaggerating with no possible way of showing them otherwise. That's why RA, for lack of a better term, sucks in more than just the pain. People just can't understand it. It's an amazing feeling to know others do understand and can help each other through the good and bad days.

[Tracey]

I was diagnosed about a year ago after many trips to the hospital with pain and not being able to walk. It took so long for the RA to be diagnosed that I already have nodules on my hands and spondylo arthropathy in my back. Its so true when you tell people you have Rheumatoid Arthritis they say oh i have arthritis too take aleve it helps. Well it doesn't help. Family sometimes doesn't understand either that I can not walk for long periods of time nor drive. My kids are so used to a mom on the go and pushing through the pain that now at 45 they just don't get I need to slow down. I get chuckles when I fall and giggles when I randomly drop things and start to curse and yell "its not funny." There definitely needs to be more awareness and further research. We look ok on the outside to no one understands we are sick and there is no 'treatment' to cure us.

[Mara]

disease inferiority complex indeed. It literally took years for any doctors/parents/peers to really listen to me. That's why reading what you write that much more powerful. I feel like someone is telling my story. It is an isolating disease. There always seems to be more power in hiding it and pretending it is not there. It feels like a betrayal of one's pride to even admit that you are in pain, despite the fact that there you are, superwoman, doing everything in debilitating pain. It's not hip. It's not cool. Its just wishing you could sit down when everyone wants to dance. It's wishing for a wheelchair when you everyone sees you walking.

By the way, are there any women on here from Minneapolis? I would love to get connected with other people in the area.