When I was first diagnosed with RA I went looking for a support group. I contacted the Athritis Foundation. They said I could make my own support group or I could volunteer with them and meet some people that way. I ended up doing both and learning a valuable lesson in the process.
The support group Squeaky Joints was started almost 3 years ago. It was first just for those diagnosed and has since branched out to being support for family members, not yet diagnosed, and those with other autoimmune diseases. With the change in the type of members we were attracting Peggy and I added our slogan: Raising awareness about Rheumatoid Arthritis one Squeaker at a time. (The group members call themselves Squeakers)
Our new mission was to be heard. To educate the world on this misunderstood invisible disease. With articles being published about us, several speaking engagements, and winning various awards I would say we are slowly changing minds. My thinking has always been that we would do for RA what advocates did for HIV in the 80s. That 10 years from now everyone will know what RA is.
One of the things that used to upset me were those darn commercials about RA medications. Take this medication and you can build a playground, run on the beach, ride a bike, or play 18 holes of golf. I get they are marketing a product. They just have no idea that most of us were on those medications and we couldn't get out of bed from the pain. Others are frustrated too. I hear it everyday in Squeaky Joints.
Honestly I don't get upset anymore when I see those commercials or when someone says I don't look sick. Why, you ask? Well I made the decision to be postitve about my RA. When others don't understand I don't get frustrated with them. If they make some ignorant remark like "you're to young" or "my grandmother has arthritis" I educate them. These commercials. They are a stepping stone for us. They are a chance for us to educate. RA is already being put out there in the universe. Who cares how! It's there and it's being talked about.
I have been struggling with a way to say this without offending anyone. My challenge to you is to stop complaining and do something. You don't like how RA is perceived? Well get off your butt and do something about it. Don't just sit there and criticize. Make your own commercials. We all have smartphones with video recording capabilities. Start a blog. Write about your struggles. Host a fundraiser where the proceeds go to research. The possibilities are endless.
I look forward to seeing your ideas come to life!