It's not often that I do a recap of an event in which I participate - but Richmond on Saturday was such a treat - so enlightening, mostly because I did so little of the talking!
To kick things off, Dr. Lenore Buckley gave a phenomenal overview of the current therapies and treatments we have for lupus, including Benlysta, and how it's typically determined which lupus patient gets what treatment. She elaborated on how each of these therapies works to curtail the disease activity (stuff I've never heard before, which was refreshing), and wrapped up by talking about future options for lupus, explaining exactly how these new drugs will fit into our current therapies. From start to finish, it was a great talk. AND she left time for questions - which is always nice.
I then joined a small panel of lupus patients, each of us taking 5 minutes to tell the story of how and why we learned to talk so freely about our illnesses. Personally, I can tell you that it took a long time for me to craft my story - it didn't just happen overnight. It was very overwhelming in the beginning - trying to find the words to explain what lupus was to people who'd never heard of it before, learning to describe how the disease affected me without breaking into tears, and what the emotional and physical toll really looked like, not just the surface stuff you read in textbooks or online. Back then, I struggled to put into words what it felt like - partially because I was resentful that I had to be the one to educate, create awareness, AND shoulder the burden of the pain and suffering. But very quickly, I realized if not me, then who? Who else is better equipped to tell the real lupus story - who else but lupus patients like us can explain what it's like to be in constant pain, so much so that brushing your teeth or dialing a cell phone is often too taxing to undertake? Who else can illustrate what extreme fatigue is like - that taking a shower used to require a 30 minute nap afterward, or that you head down to breakfast, but by the time you put cereal in a bowl and pour the milk, you're too tired to eat. And who better than us to talk about the identity crisis, the shock of taking dozens of medications, and the realignment of priorities (and the appearance of limitations) so early in life?
That said, the BEST part of the event was the breakout groups. Everyone at the event got a chance to tell their lupus story - to tell their story to people who get it - to people who understand - to people who can empathize. There were head nods, and tears, not to mention a few "Amen, sisters". It was great - and I was truly honored to be part of such an event.
So how have I learned to tell my lupus story? I try to focus on three things -
1) I make it relative, so that people understand what I'm talking about relative to their own life experiences (like the shower or cereal example above). In fact, with my doctor, I learned that saying, "I was in so much pain, I couldn't get out of bed" is lost on him, but the specific example of not being able to dial my cell phone, or make the "Ok" sign with my fingers hits home. He can quantify that pain - and thus, I get a response like, "I get it - you're in an unnatural degree of pain, and you're not happy about it. Now let's do something about it". Yes, doctor. exactly.
2) I demonstrate how it (my story) affects them (my audience) - like at the grocery store, with the gentleman bagging my groceries. I didn't look sick, I didn't act sick, so asking for help with my groceries seemed out of context. But taking 1 minute during the walk out to the car to explain why I needed help demonstrated exactly how my situation affected him, and how he played a role in my personal well-being, as well as other customers who might ask after me.
And 3), I show friends and family how best to insert themselves into my life with lupus, so that their help, concern and attention is productive, not destructive. People want to help, but if you don't show them how to do so exactly, they'll intervene where you least want them to, and whether or not you like it. You need the help - just learn to route it to the right places.