Deborah Norville, Amye Leong and me in Season 2 of New Way RA
When I sat down at my computer one evening two years ago to start The Single Gal’s Guide to Rheumatoid Arthritis, I imagined, or rather hoped, that it would connect me with other people living with RA and ease some of the isolation I felt at being young and sick. Perhaps some other young woman out there would come across it and relate. Maybe someone would eventually leave a comment or send me an email, letting me know that they understood the feelings of isolation and frustration I was experiencing. More than anything, I wanted to find a way to keep living my life on my terms as much as possible, and starting my blog was my way of declaring that I was not willing to settle or suffer silently.
Luckily for me, there were plenty of others out there who felt similarly and wanted to put their voice out into the world. As the blogosphere grew to include more and more blogs about rheumatoid arthritis and other autoimmune diseases, a community took shape and created a presence on the web that began to command attention.
Before too long, I found myself writing not just for my blog, but also for the website HealthCentral. And then I started to find myself in front of a camera talking about my life with RA and giving interviews to the New York Times and other websites and publications. Suddenly, it seemed there were an awful lot of people listening and talking about rheumatoid arthritis.
Enter New Way RA, an online talk show hosted by Deborah Norville featuring different guests sharing their advice and experiences living with rheumatoid arthritis. As a blogger, I was aware of the program’s first season, and following its launch, ended up having a few conversations with Centicor Ortho Biotech, the producers of the program, to offer feedback and talk to them about my experience and perspective on living with RA as a young, single woman.
This fall, the producers contacted me again, only this time, they weren’t just interested in getting my feedback- they wanted me to be a panelist as part of the second season of New Way RA. To me, this sounded exciting and fun, but more importantly, I saw it as an opportunity to help spread even more awareness about rheumatoid arthritis, and to show that RA affects young people like me.
I confess I was a little nervous- not so much about being in front of a camera (my theater major comes in handy for that), but about being a face of RA on a broader platform. It felt important to me to be able to offer a positive, hopeful perspective on rheumatoid arthritis while acknowledging the very real pain and disability that are a daily part of life for many people with RA. I realize that my experience with RA is only that- my experience. While many others do share my feelings and thoughts about life with RA, I am aware that I represent a ‘success’ story; I am someone who was diagnosed early and got on a treatment plan that began working quickly. My permanent damage from RA is pretty minimal, and for now at least, I’m able to manage my RA reasonably well. I still deal with fatigue, but most days, I’m not in pain, and when I am, it is a far cry from the debilitating agony I went through during the first few months after my diagnosis.
But I also remember that when I was in my most excruciating pain, when I was at my worst and couldn’t think because I was so beyond exhausted, I wanted hope. I wanted to see that there were others out there who were finding a way to overcome and live with the bad days while working towards, and then celebrating the good. I wanted to hear other people’s stories. I wanted to find a way to laugh at the absurdity of the journey I was on and know that I wasn’t on it all by myself.
And so it was that in January of this year, I found myself on a train heading to my former home, New York City, to film the second season of New Way RA. I knew it was going to be a very full weekend, and I was a bit anxious about my ability to stick it out energy-wise. I was also curious to see exactly how all of this would turn out. Would all of the people working on this program from the production end really get RA? What would Deborah Norville and the other panelist and guests be like? All my questions were soon answered, and happily so. From the get go, I felt nothing but an overwhelming sense of support, empathy, interest and honesty from everyone I met. The entire team, from the director and producers to wardrobe, make up and sound were amazing to work with. They took everything into consideration for myself and the other panelists and guests with RA to make sure the chairs would be comfortable, that we had breaks whenever we needed them, etc. And they listened. The segments were not scripted, and I feel like I was able to represent my experience in an authentic way that was true to myself, and that others will hopefully relate to, even on a bad day.
Everyone from Deborah Norville to Amye Leong and all of the guests were warm, funny and inspiring, and though the weekend left me feeling tired, I felt equally energized by everyone I had met and the work that we had done together. I feel really great about the second season of New Way RA, and I’m excited that I got to be a part of it and add my story and experiences to the program.
Looking back at my first blog post from two years ago, I wrote that one of my goals for starting the blog was ‘to combat my looming frustration at not being able to find any books, blogs, groups, etc. that reflect me - a young, single woman, living in an exciting but difficult city while dealing with a chronic illness on top of everything else (getting ahead in my career, dating, having an active social life, making the most of my youth.)’ I sincerely wish that New Way RA had been around back then. It might have made that part of my journey with rheumatoid arthritis a little less lonely. Since there isn’t a cure for RA, all I can hope is that the next young woman who finds herself in my shoes won’t feel like she has to go it alone.
You can catch the first webisode of Season 2 starting today here!
*I was reimbursed for travel expenses to attend the taping of the program and received compensation for my time in preparing for and participating in the taping of New Way RA. All of the opinions I have expressed on my blog about the program were done so at my discretion. I do not take any medications made by Centocor Ortho Biotech.