Monday, October 10, 2011

Secretary Sebelius Celebrates World Arthritis Day

This morning on Facebook I saw a post from the Arthritis Foundation in my newsfeed announcing that Secretary of Health & Human Services Kathleen Sebelius had prepared a message in honor of World Arthritis Day - which is this coming Wednesday, October 12th. It's very exciting to think that maybe the letter writing campaign actually made a difference in getting her to think and speak about arthritis!!

However, I have to admit that I have mixed feelings about her message. Before I launch into them, perhaps you'd like to watch the video for yourself:

On the one hand, I am really, really happy to see arthritis getting attention at such a high level of federal government. If Secretary Sebelius speaks about arthritis, hopefully that means there is a chance President Obama will hear our concerns as well. And I truly believe that increasing awareness about arthritis is a necessary step in achieving funding for much-needed research as well as increasing understanding and awareness for people (and children) suffering from arthritis. 

I understand that Secretary Sebelius has very limited time and that she deals with a massive number of health issues, so I am very grateful that she took the time to focus on arthritis. I also understand that awareness campaigns have limited resources and may, in fact, be more successful if you are able narrow the focus of the campaign. 

However, as someone personally suffering from RA, an auto-immune version of arthritis, and as someone who works with JA kids, who also have auto-immune versions of arthritis, I find I am still struggling with the fact that "Arthritis Awareness" tends to focus only on OA.

I have said it before on this blog and I will say it again: I am not trying to downplay the seriousness of OA in any way. It is a very serious issue in this country and dealing with OA is completely necessary for overcoming a myriad of other health issues. OA affects 1 in 5 U.S. adults, a HUGE number of people, so I understand that it also has a greater likelihood of gaining much-needed grassroots support.

But there are a couple of reasons that it frustrates me when the word "arthritis" is used by someone who is really only talking about osteoarthritis. One is that if people associate the word "arthritis" only with osteoarthritis, it may increase awareness of OA but it seems to me this confusion decreases awareness about other forms of arthritis. And, especially for those of us dealing with arthritis at a young age, it can be particularly difficult to cope when people think of "arthritis" only as OA. This type of confusion about what the word "arthritis" really means is what leads people to say "but you're too young to have arthritis!" or "Oh, my grandmother has it too."

Secretary Sebelius' video focuses only on osteoarthritis, but she doesn't even use that word until almost halfway through. Prior to specifying that she is talking about OA, she uses the word "arthritis" in a confusing way when she says "the good news is that arthritis is not inevitable nor untreatable." But I'm not convinced that sentence is accurate for people (or children) dealing with auto-immune versions of arthritis. Yes, auto-immune arthritis can be "treated," but are the treatments really good enough to allow us to live our lives the way we want to? Good enough to qualify as "good news"? Or do we still need research into better treatments? And, perhaps more importantly, I personally feel that my RA was, in fact, inevitable. It's not my fault that I got arthritis and there wasn't anything I could have done to stop myself from getting it. And I'm sure parents of kids with arthritis would agree.

Though Secretary Sebelius does say that osteoarthritis is "the most common type of arthritis," which perhaps indicates that other types of arthritis do exist, she does not even make mention of any of the other types of arthritis. I realize that her time is limited, but what about the 1.3 million Americans with RA who account for nearly 1% of the nation's adult population? And what about the 300,000 children with arthritis? And what about all the Americans affected by the other 100+ forms of arthritis? Don't they deserve a mention when talking about World Arthritis Day? I think we do. 


Nicole said...

Amen, sister! I love that arthritis is starting to get some attention, but I'm frustrated about the very limited knowledge people have about RA. Nothing infuriates me more than people asking me why I need pills for my RA, when heat packs are what work for their grandparents. I'm so glad I found your blog!

Deb aka AbcsOfra said...

Do you realize how much undoing I personally am going to have to do with this type of message out there? Like, you can fix your arthritis if you just get moving! You could have prevented your arhritis! Oh brother. I am not so sure that this type of message will help anyone with any of the autoimmune types of arthritis. I feel we will ONCE again suffer the good intent of a bad message.

~Mariah~ said...

NICOLE: I'm glad you found my blog too! I agree that it is frustrating that people have such limited knowledge about RA - but to be fair I think I had limited knowledge myself before I was diagnosed! So every time someone offers me some "miracle cure" meant for OA, I like to try to think of it as an opportunity to educate one more person about auto-immune arthritis (though I must admit this takes more strength than I have sometimes!)

DEB: You are right that using the word "arthritis" so generally causes lots of problems for those of us with auto immune arthritis. It has been a major frustration for me that "Arthritis Awareness" campaigns don't seem to promote more AWARENESS about the multiple types of arthritis. I will tell you though that things are getting better - people are starting to say OA when they mean OA. Even Secretary Sebelius did clarify that she was talking about OA. And uses the OA language. While I think it would be better if they would work harder to promote awareness about other types of arthritis, at least it seems they are working towards trying to differentiate OA and general "arthritis." Hang in there!!