I was reading somethings on RAWarrior’s blog today. In a reply to a respondent who had experienced a home invasion robbery with violence to her and her children. Their cellphones were stolen. She has RA and was so traumatized she couldn’t drive to the police station to report the robbery for 2 or 3 days. The police were incredulous that she waited so long to report it, and simply did not understand that her RA had flared and kept her from leaving the house.
In response to her reply, I stated, in part, that “I dream of a world in which we don’t have to educate others – in which they know and are able to respond to us appropriately, regardless of circumstances.”
But that throws the issue back in our laps – those of us who have, or whose close relatives have, RA.
RA Warrior has an incredible website full of accurate information. Actually, I think many rheum docs should read her blog. She is providing an important public service, and her blog deserves to be read more widely. She challenges the rest of us to “Do Something” to fight RA – whether it is education to the public, to our docs, raising money through philanthropic activism, or something else.
Me, I’m pushing for RA awareness in every way I can. I talk to people at the grocery store, at Red Hat meetings, on the street, everywhere I go – Emmy is a great icebreaker, and then I can talk about RA to them. It’s slow, but I can go into some details that may not be possible through other venues. I have a trapped audience that is interested. I can judge when their interest starts to wane, and try to get it back.
Rheumatoid Arthritis ain’t fer sissies. The sooner people understand that, the better. We ain’t sissies! The pain is real. The crippling is real, and the disability is real. It’s not in our imagination. It’s a disease we deal with on a daily basis. It affects nearly every system in our bodies – joints, tendons, ligaments, muscles, heart, lungs. We are attacked and laid low by pain, fevers, malaise, stiffness and swelling. We deal with it as best we can – some better than others. We have to take medications that help the disease, but cut down our life expectancy. The trade-off is pretty easy to see – without them life isn’t worth living, and like one of the characters in “Murder She Wrote,” we feel like hanging ourselves.
For me, as an Orthodox Christian, of course, suicide isn’t an option. But when I watched that episode on DVD, recently, I really understood how she could have done it. It made me wonder if the writer had RA or had a relative with it.
THAT is the kind of awareness we need more of – RA is so bad, some people contemplate or even commit suicide.
But even my small contributions toward awareness are better than nothing.