We made it to 2021! What joy to give a swift kick to the year that was … one that will go down in history … and to welcome a new year of hope and promise. It was such a hard year for so many, and such an anxiety-provoking time for us Spoonies. We have to take such close care of ourselves at the best of times, and the pandemic wildly accelerated that need. But now, while problems persist (of course — and still we have no idea for how long), at least we can somewhat visualize a turning of the corner, and raise our hopes for small victories in 2021.
When you’re having a challenging day, let us prescribe a listen-in to one of the guests we featured during the month of December. We were excited to launch a new series… INNOVATORS, where we talked to three dynamic health entrepreneurs: Dave Kornsunky of Heads Up Health, Celine Tien of Flowly, and Yael Elish of StuffThatWorks. Watch for continuing episodes in the INNOVATORS series, and get inspired by the creativity that abounds in the chronic illness world!
During December, we also talked with Brittany Sumner, a naturalist with a rare disorder that makes walking difficult — but what does she do for a living? She leads hikes into the wonders of nature! Jaime Sanders, a mom and patient advocate who suffers from debilitating chronic migraines and has become … wait for it … The Migraine Diva! Fashionista wellness Spoonie extraordinaire Nitika Chopra returned in December to talk about how Covid sidelined Chronicon this year, and how she pivoted to a whole new format. And talk about pivoting … how about being propelled by trigeminal neuralgia from dance to The Beebodi Marketplace. Take a bow, Kayla Harley!
We think you’ll agree that South Carolinian Brittany Sumner, 27, deserves huge kudos for dealing with her rare muscle disorder by following her career dream … she is a wildlife biologist, outdoor educator, and conservationist. And for her bravery for coming on Uninvisible Pod and doing what has been so difficult for her since childhood … talking about PMC and sharing her experiences.
“I am not good at communicating with people about my condition, like I should be,” Brittany admits. “Actually, I have an easier time communicating to strangers than the people I care about. If I really think I can’t do something, sometimes I have a hard time actually admitting that I can’t.”
Understandable, when you consider one of Brittany’s earliest memories … a field day relay race in the second grade. “I was so nervous about it because I knew I wasn’t fast and I had a hard time running. When I took off running, I just completely froze and hit the ground like a rock. And I could hear someone’s mom in the background going, ‘There’s something wrong with that girl!’”
Brittany epitomizes the saying we love so much: Fall down seven times, stand up eight! In her ongoing effort to share her story, Brittany contacted us in the hope we could help spread the word about PMC, and we’re so glad she did. Brittany is an inspiration.
For 40 of her 42 years, Jaime Sanders has suffered with chronic pain. It started with abdominal migraine at age 2 (yes, there is such a thing! It’s abdominal pain without headache), and has progressed to chronic intractable migraine (the severe headache kind that lasts for more than 72 hours and does not respond to the usual treatments). She also manages her daily life with depression and anxiety, surviving two suicide attempts, along with fibromyalgia, carpal tunnel syndrome, spinal stenosis and chronic back pain.
Yet, she is a wife and mother, and the author of the award-wining blog The Migraine Diva. How does this bright light survive each day, you ask?
“What was helpful was [that] my mother had migraine herself, growing up. So I had her understanding and her being able to explain migraine to me and empathize and sympathize and be very compassionate about my pain. That, I think, saved me throughout,” Jaime believes. “Having that support from a very young age was very critical in developing the person I am today with advocacy.”
We were so happy to welcome one of our faves back to the show in December … if you recall, Nitika Chopra is a beauty and skin care expert who lives with psoriasis and psoriatic arthritis. In 2017, she started telling her story, and as she explains, “it just kind of snowballed from there.” In 2019, she launched her podcast, The Point of Pain, and also her one-day event for Spoonies, the highly successful Chronicon. It was to be an annual event in NYC and beyond. And then Covid hit.
Down but never out, Nitika turned the event virtual this past year, and expanded the concept into an online community. Membership opens the door to friends, experts, resources, and support galore!
Nitika’s work is, in many ways, based in combatting “toxic positivity”. For her first 15 years, her joints were entirely inflamed and from the tips of her toes to the crown of her head, her body was covered in unsightly sores … and for frequent periods, she was unable to move without severe pain. “And then, if you’re still sick, ‘there’s something wrong with you,’ is basically what I was being fed from the self-help world,” she explains. “And while I know that meditation is helpful, and positive affirmations, and eating certain foods and movement — it’s all helped me. But it’s not the only thing. And it does not mean that if I’m not able to cure myself, that there is something wrong with me. It took me decades to get to that place.” It’s an attitude that fuels the new, virtual Chronicon Community. “We love you exactly where you are — whether you’re phoning in from bed, or you’re on a walk and it’s the only walk you’ve done all week, or whatever it might be, or you’re managing so many different things. We love you exactly where you are.” We love Nitika!
In this series launched in December, we posted short interviews with entrepreneurs whose work is creating waves of change in chronic and invisible illness and disability. Celine Tien is founder and CEO of Flowly, a mobile platform for chronic pain and anxiety management. Yael Elish, formerly co-founder and head of product at Waze, is founder of StuffThatWorks, an AI-based crowdsourcing platform where people share information in a structured way about their experiences with a chronic condition. The aim is to learn and accumulate the stats on which treatments work best and for whom. And Dave Korsunsky is founder of Heads Up Health, a mobile app and web portal that integrates all of a patient’s health records and syncs with pharmacies, clinics, and a wide range of popular health and fitness apps. So much inspiration in one Uninvisible Pod!
The cruel irony for a dancer and movement specialist to be stricken with trigeminal neuralgia, chronic fatigue, and muscle spasticity is not lost on Kayla Harley, the guest who sent 2020 packing! From her search to a diagnosis, to not being believed, to finding her own path to wellness …Kayla has a story that will resonate with so many listeners, and she has so much to share. Much of her healing has been in the use of holistic methods to manage her own chronic pain and fatigue, and this deep personal work has informed her practice.
Her prescription for pain? “You need to become radical about joy. And believe it. You’re not going to believe it at first; you have to force yourself, and that’s what I’ve had to do.”
Take a minute as we move into a new year and take in the advice from this dynamic movement instructor, breath pathologist, doula and energy healer. “Affirm yourself like crazy. The wildest thoughts, dreams, imaginations that exist as a part of your being, and as a part of your experience … affirm that. Get rid of the shame and the guilt that you have been living with, and get rid of it on a daily basis. You do not have to apologize for the fact that you’re going through something. The world that we live in … we can’t expect people to be supportive. Affirm yourself like crazy and let that be real.”