The Game of One Up-ping & RA: Can We Just Get Along?

By Kelly Young Saturday, November 21, 2009

- A
- A
- A

NYT Well blog was a blessing:

Yesterday I was glad to see the NYT Well blog did a feature on RA, which included our own Health Central blogger, Sara. The videos are well balanced between mild and severe RA cases and very postive.

Hey, I'm the first one to notice if a media report on RA is slanted against reality. Commonly RA is treated as a very small inconvenience instead of an incurable disabling disease like diabetes, MS, and angina. Otherwise, it's treated with skepticism as though it were not an actual disease, but a figment of our overactive imaginations. Here's an example with Woman's Day.

The NYT piece was not perfect, but the videos were fantastic, especially the last three. Listen carefully to what they say and you will get the true story of RA. I wish that those videos were on TV and YouTube for all to see - every day. That would change our world.

The comments section to the NYT piece:

The comments section fills two pages so far. That is what made me want to do this sharepost. There are a few types of comments we can recognize and beware of.

First:

There are those who have their "cure" to promote. There is is no cure for RA and the best medicines for it are promoted here on this Health Central site or on reputable RA blogs like mine (and Sara's). If anyone tries to promote one of these cures to you, you need to smile and walk - or click - away.

Second:

There are those who act like RA is not a big deal. People who can dismiss RA are aggravating, to say the least. But, there really are some cases which are milder than others. There are three recognized courses of RA , if it does not remit / go away (that's 4 total.) Here's an explanation of that. As a person living with the most severe form of RA which does not respond to medication, I "get it." However, for some people with severe RA, it is just too much to watch those who have less severe RA - that brings me to the 3rd kind of comment on that artcle...

Third:

There are a couple of comments which seem to be a kind of competion between RA'ers. Is it like "my RA is worse than your RA"? Or "my medicine works better than your medicine"? This is surprising if it comes from someone with RA. People with RA are usually pretty compassionate folks, since we live with constant pain. However pain can also make one feel pretty aggravated. That is probably what happened with a couple of the commenters.

Here is a part of how I responded them:

"However, even though we are not given the understanding that we need from our doctors, our relatives, or the crummy press, we need to give each other as much compassion as possible. Sara is a hero to me because she has worked so hard to bring recognition that RA is a 'real' disease like heart disease, diabetes, MS, or breast cancer... Pretty impressive what she has accomplished in a short time."

1 | 2

Comments (14) | Add comment

Sara Nash, Health Guide

11/21/09 2:34pm

Thanks for laying out such a clear and well-written post, Kelly. You always manage to get right at the heart of the matter.

Lisa Emrich, Health Guide

11/21/09 2:44pm

Ditto what Sara said! I'm just now catching up with tweets and such, seeing the discussion which has arisen from the NYT comments.

Being someone who has MS and RA, and who has recently been discussing changing meds, I've been getting lots of comments from the LDN advocate force who are so sad that I "feel the need to use such toxic and dangerous medications."

In the mist of researching comorbidities (for MyRACentral), I've come to the conclusion that absolutely nothing is simple and that we need to be supportive of the variety of illnesses and experiences we ALL have.

Sometime in the near future, I need to sit down and write about my first infusion with Rituxan which was done just this past Thursday. It was a tough day, but darn-it I think I actually was able to go up and down the stairs just a bit better the day after.

I appreciate you ladies very much in facing this RA business!!

Jels

11/21/09 6:58pm

The one-up-manship is the very reason I rarely participate in RA discussion boards. The first few pages of the NYT comments were absolutely frustrating to read. Fish oil cures all? Not likely!

Thanks for a great blog post, and thanks to Sara "Single Gal" for her blog!

Kelly Young

11/21/09 8:57pm

Yes, unfortunately, that does happen a lot. I think there is probably pent up aggravation in a lot of RA'ers because people don't "listen" to them enough. In a message board, there is a "captive" audience who'll listen, so it all comes out.

I find I don't like to talk about my own RA even when I'm around other RA'ers because I'm afraid that competition thing will start. So, I act like my RA is just no big deal. I actually have an older friend with very mild RA who thinks she deserves to be worse than I since she's so much older. I just let her have 1st place.

However, since my RA is so severe, that means I can't be around her very often. (Faking that I'm ok is too hard...haha.)

Ya'll take care,

Kelly

grandioseplans

11/22/09 12:11am

I haven't noticed the one upmanship in the RA communities, but I have a friend like that. She doesn't have RA, but by golly she is worse off somehow and I let her win, because it seems important to her. I thought of her when you mentioned your friend. I am grateful to have less pain and sympathize with those who have more.((hugs)) for Kelly and all those who do. It could be me next week or next year.

I take Omega 3's, but did before I knew I had RA. I get anxious when I read about natural cures, like maybe I'm missing out, but I know better. I do believe nutrition is powerful and underrated. I believe people should be tested for vitamin defiencies and food intolerances that can exasperate an illness. I get super annoyed when someone mentions glucosamine to me, but I know it's just ignorance, so I bite my tongue and explain the difference between OA and RA. I think it's good that people talk about what has helped them, whether natural or pharmaceutical, as long as they don't push and act as if it's the cure for everyone.

Kelly Young

11/22/09 7:49am

Thank you for your kind words, Grandiosplans. Can I call you GP?

You make excellent points. I wish everyone were so well informed...

I also have family members who think I ought to try "natural" methods of curing my severe RA. Like we never heard of food allergies or Omega-3? If there were a cure for this disease, it would be in the newspaper, for pete's sake.

The glucosamine one really burns up a doctor friend of mine so much he wrote a guest post about it on my blog. I'm tempted to quote it, but he makes his points in such a funny way, I won't - in case you want to read it. But, he has told me that it angers him when people are led to trust what is basically vitamins for a disease like RA, and then come to him, as a doctor, with the irreversible harm done by the RA while it was essentially untreated.

Those poor people were mislead. Unless they have a very mild form of the disease, they will eventually learn the hard way. Not good...

Anyway, thanks for the encouraging words,

Kelly

andrew

11/26/09 12:55am

Great set of responses and replies here. Thanks for doing this Kelly! I loved the NYTs profile and was thrilled to see Sara's profile.

I seriously do not look forward to the holidays as I know there will be earful of "homespun" advice..."you just need to change your diet", "I have arthritis also", "have your tried so and so?", "Fish oil works wonders", etc...

I think I'll send the NYT profile to all my family before the festivities begin!

Andrew

Kelly Young

11/26/09 11:07am

Andrew,

That is such a great idea. I have sent out HC posts before to relatives. (Not my own...) After doing that for a while, I finally decided to start a blog. But as I've written, that doesn't really solve things either...

Anyway, HAPPY THANKSGIVING to your family and everyone.

Kelly

TPG

11/22/09 9:52am

I was one of the posters at the New York Times, and the person who drew the distinction between what I term R1A, R2A, and R3A as being three different disease experiences with three different prognoses, and three different outlooks on life.

I did a later post where I said mea culpa, if that post and a similar one on a blog had any implication of one-upping.

My only two goals were thus:

a. lay out the distinctions of disease experience for a lay audience that generally only knows of the RA they hear about from ads on TV for biologics, or for those with R1A who can still participate in sports, travel, compete on TV reality shows,etc.

b. indicate my own profound emotional difficult, pain, and -- yes, I'll own the emotion -- envy at reading about those who are in the R1A and R2A categories, participating in an actual job, fun activities, and just generally making a life for themselves while those of us in the more severe R3A category can dream no longer of those things. I even look with longing the ability of those with R1A and R2A to blog regularly and make their voices heard, while those of us with R3A tend toward more invisibility because of the greater impeding nature of pain and fatigue. Bottom line: Yes, we all manage, but the borders of the nations in which we are all living are qualitatively different.

No one-upmanship intended!

C'est tout. Keep fighting this scourge. And this I wonder: do the children of those with auto-immune disorders go into immunological research professions at any greater percentage than do those of "healthy" parents?

Kelly Young

11/22/09 10:43am

TGP:

I was very delicate and respectful to you on the NYT site, and in this sharepost article. You could not know it, but I was also very sympathetic to your view as I spoke with other bloggers who contacted me regarding your posts, which were strongly worded. I even posted your "mea culpa" on a public facebook page (Sara's) (3rd post right now; 7th comment down) so that all could see that you apologized.

All along, I stated that I agreed with your points academically and supported your idea of distinction between courses of RA and the problems with the media descriptions of RA.

However, I must object to some assumptions that you are making. You cannot know and do not know how serious the Rheumatoid Arthritis is in another person whom you have never met. I'm sorry. It's just not reasonable to assume that you can.

You said, "I even look with longing the ability of those with R1A and R2A to blog regularly and make their voices heard, while those of us with R3A tend toward more invisibility because of the greater impeding nature of pain..."

You have no idea how much I have sacrificed in order to blog daily about RA. I spend hours every day reading research or talking to people who have RA and need their stories told. I talk with scientists and physicians and health care marketers about how we can begin to advocate for RA in a more forceful way in this country. You have no way of knowing how greatly I suffer in order to do these things. I have spent a great deal of time and money over the last several months in order to do this. Several other people have also sacrificed in order to help me to do this. Even my own children have spent many hours helping out.

I am sure you are a bright and lovely person. I have a great deal of compassion for anyone who has RA. I am sincerely sorry for your suffering. However, your judgments about RA bloggers are erroneous.

One last point: Sara and I have our first and last names on the internet for all the world to see. We show our faces in our pictures, too. Yes, we do maintain some level of privacy, but our identities are known to everyone and we are open to criticism by one and all because of it. We don't even know your first name.

If anyone is curious about my RA, please read my RA story here and here. My RA is a real pain. Really. My life was destroyed by RA. I am just struggling to pick up the pieces and fight back. And I thank God Sara is not as bad off as I am so she can both advocate for all of us and someday hopefully have a family...

We must fight on the same side. The enemy is RA. No one else.

Kelly

grandioseplans

11/22/09 3:50pm

GRRR!!..."RA1 and RA2 who blog regularly and make their voices heard" Anyone that read's Kelly's blog and really listens, would see that she suffers from a tremendous amount of pain and yet sacrafices so much to help others. She is definately not there to just make her voice heard! Kelly has made a huge difference in my ongoing adjustment to being diagnosed with RA three months ago. I know I'm not alone when I say this.

TGP, I am sorry that you suffer so much with RA, it isn't fair at all, but please think about what you write and do not make unfair assumptions. I agree that mild RA is overrepresented in the media etc. Use your energy in a positive way to change this. We are in this together and we can make a difference if we work together. Write a sharepost about your RA experience, your voice will be heard. We will listen. I didn't know RA could be so severe until I got to know Kelly through her blog. So if only RA1 and RA2 blogged, then we wouldn't know.

Studying auto-immune diseases would be fascinating to me.

(Grandiose Plans I had until RA came along, but I'll find another way!)

Ronda

TPG

11/22/09 5:11pm

When you're right, guys? You're right.

I of all people should know you can't tell by looking, or even reading a few articles and postings, about the quality of any one person's life, or the sacrifices and pain that person is suffering.

Keep leading the charge for awareness and a cure. God bless you for what you're doing.

Kelly Young

11/22/09 5:32pm

TPG,

If you would like to have your own view of RA represented, please feel free to submit your story to the RA Onset Stories on my blog. Here is the link to the instructions. I do allow pseudonyms for publishing if you would like to continue to remain anonymous on the internet. You can contact me via the email on my website. Good luck in the fight against your own RA and I hope we can work together to make the rest of the world "hear us."

Take care,

Kelly

Lisa Emrich, Health Guide

11/23/09 3:44pm

Hi there,

I am finding this discussion very interesting on many levels. I have RA, but I also have MS and a few other minor health disorders thrown in. I blog about my experience living with both diseases, although I do talk more about my MS than my RA on my personal blog at Brass and Ivory. This is probably because MS has been more disruptive in my life than the RA, but I do remember crying at night because of the extreme, severe pain before I was finally diagnosed. I really wished that someone could just cut my arms off to put me out of my misery. Thankfully, methotrexate helped to alleviate that severe pain

I have not been painfree by any means, but I acknowlege that my experience with RA is nowhere near as devastating as that of Kelly or Lene who makes use of vocal-command technology on her computer. Rather than typing, Lene dictates her posts (I believe) and must limit the time she spends sitting at a computer.

The importance of having our voices heard sometimes overpowers any physical discomfort or difficulties we have in getting those words on paper (or rather the computer screen). If someone, like yourself, can read blogs or news online and post comments, then you can surely blog!!

Blogs can be a powerful outreach and source of support. My friend Herrad has progressive MS and developed a very deep pressure sore last year. She was confined to bed in order to heal in August 2008. It was originally thought that it might take a couple of months for the wound to heal, but instead it took over a year!!

They were waiting and watching for the wound to heal before she could have support specially-made to keep her body in a good position in her wheelchair. After 15 months in bed, Herrad is having to learn how to sit again before she can even make a trip outdoors. During this challenging time, Herrad has used her blog as a source of connection to the world. It has been wonderful to see how many folks have discovered her special qualities, while she has also spread awareness of the devastating effects MS can have on one's life.

There are times which she cannot control her hands well enough to type, or even to accurately click on various webpages. But still, she blogs daily using the Blogger platform. You, too, can do this. In fact, the world of RA bloggers needs more voices and you will find a huge support system of folks who eagerly reach out to help each other.

The more voices, the merrier.

The Game of One Up-ping & RA: Can We Just Get Along?

Ask a Question