I have personally been fighting this heart-wrenching, life shattering, and often disfiguring disease since 2011, when I was hospitalized with lupus nephritis. After all these years, only recently have I truly come to appreciate the fact that there is a lupus community out there: a community that is of tremendous value. There are at least 1.5 million Americans with lupus (5 million worldwide and counting)… and yet, I too often find myself unable to see that I am not alone in my experience… No one should ever have to face lupus alone. I do not believe that anyone could…
Us lupus warriors would not be here without our caretakers: our doctors, our researchers, our loved ones, our fellow soldiers. The ones who get you to every appointment. The ones who drive their failing children’s bodies to the emergency room time and time again. Those who keep you above water when you say you just can't swim anymore. Who tell their momentarily unrecognizable daughter, "You are just in a chrysalis...but you are going to come out of this a butterfly." I could not begin to tell you what my disease has put my family through, let alone me.
I have emerged from my cocooned state many times now. I wish I could tell you I'm sure that I will not have to go back in...but I cannot. As lupus has no cure—-yet. The truth is that none of us can. No matter what diseases we have or do not have, no matter how our life stories differ from one another, life will throw us unending difficulties (to say the least). And we will suffer in facing them. We have all been through trying times, times we did not even think we would get through, because some things demand a level of grit that is just unfathomable. But we will all also know great big love—for ourselves, yes, but also overwhelming so from our friends and our family.
From the darkest most mangling part of our journeys, the strength and light of the love that the people around us have in their hearts is what carries us out of the tempestuous waters and onto the shore once more.
Please help me in trying to help those who are trying to find ways to help all of the “chrysalis kids” that are out there. I am a part of the lupus community. But we are all, every one of us, a part of the greater community sharing this planet. And we need each other—we need each other more than ever. I believe in a cure for lupus and I have hope for new medications that have yet to be invented, that will relieve what I can assure you is a deep and piercing agony. Without that hope I could not keep going.
Right now during this pandemic, we all know how it feels to be desperate for a cure. After COVID19 has found it’s remedy, lupus patients will still be waiting.
Many of us are lucky enough to have loving families, but not all are fortunate enough to be able to get the rest of the care they need: treatments and medications that, more often than not, us lupus patients cannot live without. I'd like to give them some hope and time--even just a little--while we are all waiting for a cure. Sometimes, realizing you have the power to help someone when they need it, is actually what helps us, ourselves, to keep going.
Thank you for being on my team—from the bottom of my heart. Now let’s take a walk!
* Due to COVID19 and social distancing, the 2020 Walk to End Lupus Now Virtual Walk will be on September 26, 2020.
With big love,
Hannah (The Chrysalis Kid)