Share Your Story
Hi, my name is Jewell. I am a trauma-informed yoga instructor. My personal practice has spanned 10 years and I have been teaching for 4 years. I often share with students practicing with me for the first time, that I have been living with Lupus and Rheumatoid arthritis for nearly three decades. Both chronic illnesses inform the way that I teach in the sense that my sequences are gentle, slower, and tend to focus on joint mobility and functional movement.
If you attended the Move + Meditate Series that I hosted on the FCSA Facebook page or any one of my in-person yoga classes prior to the pandemic then you probably heard me recite some version of this script. Outside of a yoga studio or wellness space, I often feel uncomfortable sharing that I live with an auto-immune illness. I feel like my illnesses are my battle to bear and most of my friends and family don't care. Through the years the people closest to me have been dismissive of my symptoms and lack empathy to relate to a life lived in daily pain. So, I chose to stay silent.
I remember one time I tried to share my symptoms with a group of friends in Texas. I lived in Dallas from 2010-2012. I was recruited from New York to work for JC Penney's corporate campus. I was excited about the opportunity to grow my career in the fashion industry and to expand my horizons to a new state and city. Extreme fatigue and sun sensitivity are common symptoms of Lupus that I experienced about a year before my official diagnosis. Once I moved to Dallas though, the oppressive Texas sun amplified both of those symptoms and would constantly trigger Lupus flares. I took naps in my car on my lunch break at work and often canceled plans with my friends to rest.
One weekend I felt well enough to engage in dinner and a movie at a friend’s house in Uptown Dallas. We were talking on the couch and I felt my energy dragging. Fighting fatigue is always a losing battle so it wasn’t long before I started to doze. I was asleep for only a few minutes. When I woke, I told my friends about my Lupus and extreme fatigue; I explained sometimes my body feels drained and I just fall asleep. As soon as the words left my mouth one of my friend's first reaction was to let out a wide-open mouth laugh. I have a dry and witty sense of humor, so I think my friend thought I was making a joke. He did not mean malintent, but I felt subconscious for sharing something so vulnerable about myself. Another friend tried to soften the awkwardness of the moment and said, “o I didn’t know you had Lupus.” It was a little opening for me but I sat silently. I felt shunned, ashamed, and unsafe to share more.
The memory followed me. I had started practicing yoga and meditation when I lived in Dallas. It was easier for me to retreat into the solace of my mat and mindfulness practices, but it was (and still is) depressing living with daily pain. Few people genuinely ask me how I am feeling on a physical, emotional, mental, or spiritual level. One of the few times in my life that I’ve truly felt seen and supported was while I lived and worked in Chicago from 2014-2017. While there I attended Trinity United Church of Christ; this church had a Lupus Ministry support group. In a room full of Black women suffering from the same symptoms and illness, I felt secure enough to share my story.
Fast-forward to my relocation back to the East Coast in Fall 2017. I attended a radical book club to make some connections in my new city. As we went around in a circle introducing ourselves, one brave soul spoke up and said, “My name is Mesha Allen and I’ve been living with fibromyalgia…” My eyes danced over her words and my heart hummed a hymn full of possibilities…potentially a new friend that could empathize with my illness. I was so moved by Mesha’s revelation that I linked with her immediately after the book discussion so that we could exchange contact info. Mesha’s simple share in that space gave me permission to speak and release some of my pain.
I revisited that moment with Mesha this month to ask her where did she get the courage to be so vulnerable with a group of strangers and if fibro is one of the first facts that she typically divulges about herself? Mesha said, “Um, it all depends on who I'm around. Like if I feel safe and it depends on the topic of conversation or… just the kind of people that I have around me.” Mesha told me that through her transparency she was able to help two of her friends that share similar symptoms to fibromyalgia; she was able to direct them to resources and support tools. There’s so much power in unapologetically speaking your truth. The act of owning one’s narrative is self-empowering and could potentially impact or inspire others.
““If you are silent about your pain, they’ll kill you and say you enjoyed it.” - Zora Neale Hurston”
The truth creates a ripple effect that resonates deeply. I’m proud to say that a few years after I met Mesha, she became the Fibro Youth Advocate Coordinator at the Fibromyalgia Care Society of America and one-third of the Fibro Friends Podcast. Mesha advocated for me to meet Milly Velez, the director of the FCSA so that we could connect and coordinate a digital wellness program for the fibro community. I was inspired to create
Move + Meditate, a guided gentle movement and meditation practice designed for people living with chronic pain and auto-immune illness. That partnership blossom throughout the pandemic. We had over seven thousand people with chronic illness and their allies participate in our series that ran for forty-two weeks. Milly invited me back to host Move + Meditate Season 2 and I’m now a monthly contributor to the Mi Voz Blog. I am so grateful for Mesha feeling safe enough to share her story; her vulnerability made me feel comfortable and connected me to a community centered around healing.