Thursday, October 24, 2013

Jingle Bell Run Kickoff Party

As I let slip in an earlier post, I have agreed to be the honoree for the 2013 Denver Jingle Bell Run. Yesterday I took OZL to the zoo for a few hours and after work we met up with APL to attend the Jingle Bell Run Kickoff party. Some friends of ours - who have been members of Team Z since day one - also joined us there (and even won some Jingle Bell Run swag in a raffle!) It was really nice to get to meet the Arthritis Foundation staff and members of the Jingle Bell Run Committee who work so hard to put together such an important fundraiser. 

Personally, I feel a little bit awkward having the spotlight turned on me - especially in person. I talk all about my innermost feelings and struggles on this blog, but I do that behind a shield of words. Generally, I am not faced with anyone's reactions to what I write, and when people do send me their reactions I have my own time and space to process what they say and figure out how to respond. But talking about my story and my experiences in person is a different matter and one that, as of yet, I am still a little bit uncomfortable with. So I am planning to try use this experience as a chance to grow and improve my speaking and interpersonal skills! (Translation: be less awkward, Mariah!!!)

Aside from potentially improving my awkwardness in talking about my arthritis in person, I don't  think that I personally need the honor of being the honoree. However, I am glad that the Arthritis Foundation chose me because I am proud to serve as the face of a demographic of arthritis sufferers who I feel receive less support, recognition, and resources than they ought to.

The Arthritis Foundation is a truly a fantastic organization, doing amazing things for everyone who lives with arthritis and helping to fund the research that will hopefully lead to a cure. But, like any organization, they also have limited means. Unfortunately, within those limited means, I feel that my demographic sometimes gets lost in the middle when it comes to promoting awareness and providing support.

On one end of the spectrum, the Arthritis Foundation spends a lot of time and energy focusing on older adults with osteoarthritis (OA). This makes a lot of sense because it is the largest population of people living with arthritis. Providing support and resources for people with OA is especially important because it can bring the largest number of people to the cause, which can only help promote awareness and improve fundraising efforts. Not to mention that the focus given to lifestyle changes, therapies, and assistive devices for older people with OA certainly overlaps to provide some useful support for older people with RA and other forms of arthritis. 

On the other end of the spectrum, the Arthritis Foundation spends a lot of time and energy focusing on children growing up with juvenile arthritis (JA). I can only imagine that having arthritis makes for a very difficult childhood, so I honestly do think these children and their families deserve all the love and support they can get. And, realistically, the sad story of a child growing up with arthritis also speaks to the heart and can certainly help a great deal with fundraising.

But what about those of us who were diagnosed in our 20s or 30s? Those of us who haven't yet started a career or started a family or who are in the middle of doing so? Or even the kids who grew up with JA who are no longer young enough to benefit from the JA materials? I personally do not think there is enough support for this demographic - my demographic of young adults. The support for kids seems to end at adolescence. And the language used to speak to older adults about adjusting to their arthritis - the need to slow down and make compromises - is not really something that someone just starting out with their life wants to hear. (In fact, I was quite upset about the use of this type of language when I was first diagnosed.)

Being a young adult is a difficult enough transition when you are perfectly health. I really think that young adults with arthritis deserve more resources and support, though do I realize this is difficult to accomplish without taking away from the other demographics. But we need hope too. We need more stories of people finishing college and grad school and starting successful and satisfying careers, despite their arthritis. We need more advice about how to talk to our employers about our physical needs, and more information about our workplace rights. We need more hopeful and uplifting information about how to survive off our meds so that we can start a family or breastfeed our babies. We need more resources so we can connect to and support each other as we travel through the prime of our lives while battling arthritis.

This is one of the main reasons I write this blog and it is certainly the main reason I agreed to be the Jingle Bell honoree. And, seeing as the Arthritis Foundation chose me as the honoree, hopefully we are all taking a step in the right direction.


SLOCoaster said...

I loved this post. You speak to the heart of the challenges of young adults with chronic diseases. You aren't a rosy cheeked child with a disarming grin, but you eloquently articulate the challenges faced by those living with RA. I, of course, can substitute the chronic diseases my adult sons live with, and your message resonates with me as well. Thank you.

life with a flare said...

This post hits the nail on the head about the middle ages getting forgotten about, I feel like being diagnosed in my late teens puts me in this place were all the information out there about my disease is either directed to little kids or the parents of kids diagnosed, but not to a college freshman. I feel like fellow bloggers are the only ones out there who are providing the support to this age group.