By Becky Rader
I’m glad to share about my experiences from a volunteer perspective at the 2012 American College of Rheumatology (ACR) Annual Scientific Meeting last week. The Rheumatoid Patient Foundation (RPF) needed to present ourselves, speaking to people from all over the world that held jobs from doctors to researchers, who studied effects from sociological to pharmacological. It also was a little overwhelming because there were so many things going on and you want to see and do everything.
This year it was even bigger in scope as far as the venue went. It encompassed two buildings and there were multiple floors. There was minimal directional signage and minimal seating. There was another very significant difference in my attendance this year and that was the intensity of my own disease. Things that I was able to do last year without a second thought required so much more physical and mental effort, bringing to me the realization that I should have taken that stubbornness against getting a cart to use at the venue & checked it at the front door, but that’s another story. Just flying home from there was not without its extreme challenges, like having to board an airplane from the tarmac at O’Hare airport with a knee that was completely useless, feeling so embarrassed about being the last one on the plane that I want to crawl under the seat, but, they were so nice in helping me. They brought a ramp for me to walk up and everyone on the plane played musical seats so they could give me the first seat. I think I managed a record in the airline industry in managing to make both planes over 10 minutes late in leaving, and that was WITH airline assistance. So the question I’m sure you are asking yourself is this: Would I do it again? I can answer that with three words...in a heartbeat.
Having this access to doctors and researchers is unprecedented for us as rheumatology patients. It is important for us to be there because there are doctors and researchers attending who are at the top of their field of study all in the same place, and we have the opportunity to get their buy-in or continued support. Yes, it’s a little like campaigning. For me, this reinforces my belief that we as volunteers for RPF are not just volunteers, but advocates for all Rheumatoid patients. I am a patient and I am an advocate. Now, don’t get me wrong, talking to people isn’t the only thing that I enjoy about going to the ACR meetings. Being able to listen to a session also allowed me to build my knowledge about my disease. For me, knowing the “whys” behind the things going on in my disease helps me to understand where my medications come into play, why my body reacts the way it does to inflammation and pain, and what is coming down the pipeline in terms of medications and treatments. There were also over 150 exhibitors that also had some really yummy incentives to go to their booths such as shakes and coffees and who knows what else!
This year, we also had the Limited Mobility Suit that allows the wearer to experience a majority of the same limitations Rheumatoid Disease causes in daily life. The only thing that was missing was the pain. While it was fun to see how the “victims” would adapt to wearing the suit, I really believe this is a great tool to help those doctors who may not quite understand what it’s like not to be able to fasten small hooks or zip zippers in clothing or hold a utensil or even be able to raise your arm to pull a shirt over your head.
Last but not least, why I would go again in a heartbeat? That would be for the fun and friendship that you get from finally being with people who understand exactly what you go through on a daily basis. These are friends that once you meet them in person, your friendship is cemented forever. It took me 15 years to meet people who really understand what I go through. I have always been big on educating the people around me as to my disease and how to best help me. This is one time that I don’t have to do that and it still takes me by surprise every time someone proactively offers something to help me at the moment. You don’t have to pretend to be feeling fabulous if you hurt, but the excitement of speaking to everyone really gets those endorphins going and you don’t notice it for a moment. As you can tell, this is something I feel passionately about. It is up to us as patient advocates to help the public truly understand Rheumatoid Disease and eventually understand it well enough that a cure is found. And don’t be afraid to get a scooter so you don’t have to miss out on any of the good stuff.