Tuesday, April 27, 2010

"O" and "R" Are Not The Same

About a week ago, I got an email from someone at YouCast Corporation. As far as I can tell, YouCast is a social media company that is helping the Arthritis Foundation promote their new website. The email they sent me had the subject: "May is National Arthritis Month - PSA Campaign from Arthritis Foundation/Ad Council." Sounded pretty interesting....

Here is how the email started:
Dear Mariah,

I wanted to say that I appreciate what you do, sharing your journey of having RA. I love your tagline: I have RA. It doesn't have me. You are an inspiration.
Wow. How nice, I thought. The email then continued:
I wanted to share a new PSA campaign with you, Fight Arthritis Pain. It encourages everyone - especially those with arthritis - to simply move for better health.
Cool. I'm certainly all for "fighting" arthritis pain. Arthritis pain sucks. And I have been trying to get more active lately. Let's see what the Arthritis Foundation has to say about that.

The email then continued by encouraging me to use this blog as a forum for spreading the word about about their new campaign. But when I went to their website to check it out, it turned out that the website was almost entirely focused on osteoarthritis (OA). On the whole website I saw only two passing references to rheumatoid arthritis (RA), and nothing on the website clarified at all whether the suggestions they were making about OA are also useful to RA patients.

Now, I'm not trying to downplay OA at all.  Like I said, arthritis pain - any arthritis pain - sucks a lot and I am all for fighting it. But I do think it has to be acknowledged that OA and RA have different causes and thus they may need to be addressed in slightly different ways. For example, I'm not convinced that exercise is always the best option for someone with RA. Not during a "flare" anyhow.  I have certainly done that in the past and it has made things worse, not better.

Interestingly, however, I think whoever is behind the actual FightArthritisPain.org website seems to be aware of this issue, because the website itself is extremely careful about using the phrase "OA" or "osteoarthritis." Even the video clip says "osteo-arthritis."And, as far as I can tell, they never use the confusing phrase "arthritis" alone. 

But somewhere along the line the difference between OA and RA got totally lost. From what I can tell, the advertizing was being targeted at me simply because I have the word "arthritis" in my blog. And even though it looked like the person from the ad firm had actually looked at my website - they even typed the word "RA" in the message they sent me - they obviously didn't understand that the product they are marketing is targeted at people with OA, not necessarily RA. 

In response, I sent them the following message:
Thank you for your email. I am actually very interested in getting involved in arthritis education and outreach on my blog. I'm also in the process of trying to figure out - for myself! - how to be a bit more active. And I am certainly interested in fighting arthritis pain.

However, the materials that you have sent me - the video, the website, and all the related resources - are all talking about osteoarthritis (OA). I have - and my readers have or are interested in - rheumatoid arthritis (RA). My joints aren't aching from age, wear and tear, obesity, or injury. I was extremely active and only 25 years old when my RA hit and my body shut down. RA is an autoimmune condition. OA is not.

I think one thing that makes RA particularly difficult to deal with - particularly for a younger person who "looks healthy" - is the confusion over what "arthritis" means. Sometimes, when I tell people I have rheumatoid arthritis, they respond with "oh, I have a little arthritis in my knee." But it isn't the same thing. And promoting "movement as the solution to arthritis" without clearly differentiating the different types of arthritis only perpetuates this confusion.

I see only two passing references to RA on fightarthritispain.org. Nothing really clarifies what RA is or whether the suggestions about OA are also useful to RA patients. While the resulting joint pain may be similar, the causes are fundamentally different, thus I don't think that solutions to OA are necessarily solutions to RA. While movement probably/usually helps with RA, I'm not convinced that is always the case.

If you have some materials that are more specifically about RA, or at least differentiate between the different types of arthritis, I would be more than happy to post links to those on my blog. But this information seems pretty obviously directed at OA, so I'm not really sure why I would write about it on my blog about RA,

That was six days ago. I've had no response at all, so I guess that gave me a reason to write about it. It boggles my mind that the people who made the website were obviously clear of the difference between OA and RA - and even went out of their way to always use the phrase OA to make it clear. But somehow the people who are advertizing the website think OA and RA are the same thing? That makes no sense at all to me. 


A said...

I think you're right-- the site has their stuff down, but the eager marketing team does not. It sounds like you were on the receiving end of a "custom first paragraph, form letter" style outreach plan. May be worth an email to the site (through the contact us section) to let them know that their marketing group is reaching out with inaccurate information.

~Mariah~ said...

Actually, I think that's a good idea. And a fantastic method of procrastination.

Unknown said...

I have a friend who would constantly send me emails about stuff they saw on the web and TV for "cures" for arthritis. I had to remind him, that those infomercials were for people that had OA and not RA, I didn't play too much baseball or golf too much.(I didn't even want to get into how those things were mostly scams but whatever.) I mean, bless his heart for thinking about me. But really all I wanted to was ring his neck for not listening!!!!

~Mariah~ said...

EMILY: It can be so frustrating when people try to "help" but are so misinformed that it actually makes it worse. Particularly when people can't tell the difference between OA and RA, because while I think at least SOME OA treatments would help with RA pain, they certainly won't cure your messed up immune system. ~;o) And it can also be frustrating to have people pushing "miracle cures" on you or saying "if you only did X, your immune system would be fine." I guess we just have to remember (a) that they are only trying to help and (b) if they come up with something you want to try, great, but ultimately it's YOUR body, not theirs. You are the only one who can figure out what works best for you.

Sorry for the rant. Obviously I have been in that position as well. ~;o)