May 10, 2020
The Power of Story – Cory Martin
There is immense power in story. I know this because I have learned to share my own and I have seen all the good it’s done. While every lupus patient has a story, I know that not all of us want to share the details of what we go through on a daily basis, so I share my story so that maybe you can feel less alone.
I’ve been living with chronic illness since 2008. Back then, my doctors deduced that the pain, numbness, and fatigue I was experiencing was caused by multiple sclerosis. There were lesions on my brain that pointed to this diagnosis. I was twenty-eight years old and devastated by the news. But instead of sulking at home (though I did do plenty of that) I decided to write about my journey. Though I shared little of what I was going through—the fears I had, the symptoms I was experiencing—with those around me, I poured my heart into my memoir Love Sick. Family and close friends knew what I was going through, but the world at large was left clueless. When my memoir was published in 2016, my health was no longer a secret. As scary as it was to share my story with the world, it was also one of the best things I ever did. Through my book, I found a tribe of people throughout the world who felt the same way I felt. I no longer had to worry that all the fears I had about a future with a chronic incurable disease were only mine. Others with MS reached out to share their own fears and struggles. I no longer felt alone.
Flashforward to 2018. I could barely walk up two stairs without getting winded. Workouts I could easily complete the week before were now impossible. Intermittent pains that I had experienced throughout the years had turned into a constant deep bone pain that made me want to crawl out of my skin. I cried at the dinner table because I didn’t have the energy to chew my food. I was so fatigued my work and writing suffered. I told the MS doctor about my new symptoms, but she didn’t think it was MS this time. I was sent to a rheumatologist and after many vials of blood were drawn and the results returned, I was told I had lupus.
I was devastated once again. I knew nothing about lupus, except that I hated the way it was making me feel and I didn’t like how it was interrupting my way of life. My doctor prescribed hydroxychloroquine and I began to research the disease. I learned how it could affect me now and in the future. I found groups like LupusLA and tribes of fellow warriors posting about their experiences on Instagram. The drugs started to work, and I started to feel better, though nothing was perfect. As I adjusted to this new normal, I knew what had to come next.
Though I was thrown off by a second devastating diagnosis, I knew I couldn’t keep it a secret the way I’d done with MS. I knew I had to share my story.
I wrote about my experiences here and there. I told anyone who asked how I was doing how I truly was: I was wiped out. Having difficulty adjusting to my new normal. I was in pain. Fatigued. Missing my ability to be as active as I once was. Missing days on the beach and long swims in the pool. Missing my old life.
A month ago, as President Trump announced that Hydroxychloroquine could be the possible cure or treatment for Covid-19, I felt an even stronger urge to share my story once more. I was already living in fear that lupus put me in the higher risk category when it came to the novel coronavirus, but when it became clear that supplies of hydroxychloroquine were being hoarded and withheld, my fear turned to rage.
I knew that without the drug, I would certainly suffer, and I knew that so many others like me would too. So, I did the only thing I ever know how to do in these types of situations. I wrote about it. I wrote about the logistics and the unintended consequences of hoarding HCQ for CNN. I wrote about how destructive my lupus could be if I no longer had access to my life-saving prescription for HuffPost. I shared my story far and wide. I did it because I had learned many years ago that my story is my most powerful weapon against any adversity I face.
My story educates others on what it’s like to live with lupus. My story tells people my deepest fears. My story puts a face to the shortage of HCQ.
I know how hard it is to share your story. I lived in silence for eight years when it came to my health. But now I find liberation in telling all that I’ve been through.
Living with lupus is not easy but knowing there is a community out there experiencing the same fears, similar symptoms, moments of anger and rage, makes me feel less alone. And if there is anything I have learned through sharing my story it is that when I feel less alone, I feel like I’ve got this. Like I can make it through each day. Like I can keep moving forward. So, even if you’re not out there sharing your story publicly, know that I still understand it, know that I hear it, and know that we are all in this together. Our stories are powerful.