Over the last couple days there has been a huge amount of disappointment in the JA community. Someone who wants to be a voice and advocate for us won't show the negative side of the disease that Jordan and 300,000 other kids in the US live with. She only wants to see smiles and happy faces. That's fine if you want to keep the stigma that autoimmune arthritis diseases like RA, JA, PsA and lupus aren't serious.
A few other parents have reached out to try to get an explanation as to why she won't show how our life really is. We've all had the same type of reply, it's not what the media wants to see. "I have worked my entire career in the media. I know for a fact that if I start showing all the negative sides of arthritis I will NEVER get any attention for these kids or be able to change the stigma attached to arthritis." Yesterday I got, "I guarantee if I do what this community is asking, there will be no more national segments." Several of us don't believe that.
Today, Super Bowl Sunday, one of the first commercials shown during the pre game show was a commercial for The Ronald McDonald House Charities featuring three year old Anastacio, a leukemia survivor. That brought me back to one of the questions I asked, why does St. Jude show sick children? Their commercials show children being wheeled into the OR and bald from chemotherapy. When you hear the St. Jude telethons, they tell the REAL stories of the patients they help in order to get support from the public. The stories touch hearts and that opens wallets. The money raised during these telethons is used for research or programs for families and patients. Yes, we have the Arthritis Foundation but they don't show the truth about RA or JA either.
Why can other diseases show the real daily battles, but those of us with RA have to hide ours? Why are celebrities ashamed to show our real stories?