Long before my six-time award-winning book, Smiling on the Outside: Secrets, Sex, Shame and the Search for Self-Love came out in June 2017, I was using a MeToo hashtag, talking about Me, too! Moments and sharing my Me, too! Moments Manifesto. I believed (and still do) in the healing power of creating and sharing these Me too! Moments so much so, at the end of every chapter of my book, I asked readers to identify their own Me, too! Moments, while at the end of the book, I extended an invitation to join The Me, too! Movement.
My version of and vision for The Me too! Movement is very different from the one we read about in today's headlines, so when Alyssa Milano's tweet went viral, I was left dealing with imposter syndrome and feeling like a fraud, even though I knew nothing of earlier movements or uses of the me-too phrase.
And the more attention the media gave to the viral #MeToo campaign, along with the discovery that Tarana Burke had been talking about MeToo for more than a decade, the more I went into hiding, and the more my health suffered. My anxiety went through the roof and rather than continuing to promote my award-winning book, speaking to groups and getting my message to the people who needed it, I shut down from the fear of how people would view me and my work in light of the viral campaign. My life and my health were hijacked by #MeToo, the very phrase that had given me purpose.
And like most experiences that feel horrible at the time, I received a gift from having my life and health hijacked by #MeToo.
You see, I had become a master of hiding the truth about what was happening to my body in the same way I had kept my other secrets from those closest to me. And even though I saw the light of hope in someone's eyes through the Me, too! Moment we created by sharing stories of trauma and shame, talking about my health issues felt different, so I stayed silent.
One month after my book came out, I could no longer hide what was happening to my body. The symptoms had gotten progressively worse since the release of my book (I’m convinced there is a connection, but I’ll save that for a future post) and Big D (the love of my life and my #1 fan) convinced me to go to the doctor and not give up until I had answers. So, with a laundry list of symptoms that included joint pain, morning stiffness, dizziness, balance issues, headaches, sleep challenges, fatigue, ringing in my ears, hot flashes and more, I met with my primary care doctor who referred me to multiple specialists.
And when the initial tests came back normal, the specialists referred me to other specialists. By early October, my symptoms exploded. The morning joint pain and stiffness had spread to my feet, my hips, my elbows, wrists, ankles, and back. And it was staying with me throughout the day. Gone were the afternoons free from pain and evenings where a night out meant dancing until the early morning hours. My headaches were becoming more frequent and intensely painful, and still, there were no answers.
To an outsider, I continued to look healthy, and I still do today.
After numerous tests, MRIs, X-Rays, CT scans, and more blood draws than I can count, more than four months later we finally had some answers. I needed shoulder surgery, my clavicle was bone-on-bone, and I had a fractured right first rib, although no one could explain how the fracture in this location could have possibly happened.
And there was more. A lot more.
When Big D and I initially talked about figuring out what was wrong with my health, I didn't want to consider it could be something without a cure, something that could impact the rest of my life, or God forbid, something that could shorten my life; but that is precisely what it is.
Everyone always worries about the Cancer diagnosis, and having watched both of my now deceased parents deal with cancer; it was something I had thought about many times. And since I'm adopted, and not biologically connected to my parents, my thoughts focused on treatment options should I find myself with a cancer diagnosis. I decided against chemotherapy as a treatment. Of course, I realize it's easy to make a decision when you don't have to and much more challenging to make the decision when you're facing a diagnosis.
I don't have cancer, and I am grateful.
My new diagnosis, however, forced me to face the same decision as chemotherapeutic drugs are the recommended treatment for my condition. Did. Not. See. That. Coming.
One of the first things I did upon receiving the news was to join a private support group on Facebook. With more than 15,000 members, suddenly, I was no longer alone. I knew I wasn't the only one, and I learned I wasn't crazy. All thanks to the healing power of sharing Me, too! Moments with others living with similar experiences. We came together, not for political purposes, not to change the culture (although there are still some things I'd like to change), and we weren't talking about experiences of sexual harassment or assault. We had each come to this space out of a desire for validation, acceptance, and knowledge. We needed to be with others who understood. We needed to hear someone say, “Me, too.”
De Ja Vu was happening, and I realized it was because the feelings I experienced when joining this support group, were the same feelings I experienced the first time I shared one of my traumatic, shame stories. The same feeling people had upon reading my book. It's the same feeling my Grandmother described having when she talked about sharing worries, secrets, and shame with her close friends nearly three-quarters of a century ago. It's the feeling of being engulfed by compassion when sharing a Me, too! Moment and suddenly realizing you're free.
Today is the beginning. I am no longer allowing myself to be held hostage by the viral #MeToo campaign. My version of The Me, too! Movement along with my Me, too! Moments Manifesto is about spreading compassion, and my diagnosis reminds me that compassion must begin with ourselves.
I have Rheumatoid Disease (RD). You've probably heard it called Rheumatoid Arthritis (RA), which is now the commonly used diagnostic term, which is unfortunate since arthritis is only one of many complications of this disease. RD/RA is an autoimmune disease that is systemic; meaning it impacts all the bodily systems from organs to joints and there is no cure.
I'm still learning about the disease and what it will mean for me. It’s scary and makes me sad, but I’m not alone. Millions, like me, are dealing with chronic pain and more while silently living with this invisible disease, so I've decided to share my journey here, with all of you, creating Me, too! Moments along the way for anyone feeling like they are the only one, a little crazy and all alone.
As to my decision on treating my disease with the recommended chemotherapeutic drugs... Interesting how things change when the decision is not based upon a hypothetical situation. I've decided to try the drugs.
Tonight will be my first dose.
I'd be so appreciative if you could send a little light and love my way.
Until next time.
Gentle hugs and lots of love.
P.S. If you'd like a copy of the Me, Too! Moments Manifesto, you can text ME-TOO to 44-222 or visit www.TheMeTooMovement.org ... and if you have a Me, too! Moment of your own, please consider becoming a Me, too! Messenger by sharing this post with your story or posting it in the comments section below. I promise, there is someone who needs what you have to share!