Somewhere in the mess of city and chaos, there was a space for chronic illness advocates to unite -- one that glowed beyond the blue light of digital advocacy behind glowing iPhone screens and into the physical realm. This would be an auspicious day for many who had only ever shared their stories in vulnerably transparent Instagram captions. While that alone is a courageous step, this event called on all to own their conditions unapologetically, live and in-person, despite the pain that often accompanies chronic illnesses.
Whether crossing oceans, state lines, or neighboring boroughs, all buzzed with anticipation amid a mix and mingle, complete with lattes from Joe Coffee Company and various broths from Brodo. Goodie bags with mindful, gluten-free snacks — a thoughtful and inclusive selection from event founder Nitika Chopra — awaited the perusing passerby at the far end of the venue. Soon, Chopra would deliver a warm welcome before the 220 in attendance.
Enthusiastic chatter among the crowd spoke to the level of excitement in the room. For many who had joined the Facebook group Chopra created in the weeks leading up to the conference, this day was long-awaited.
Because the majority of audience members coped with chronic illness, Chopra started by thanking her friends at Healthline, who partnered to make Chronicon possible, and all in attendance for simply showing up. Living with psoriasis and psoriatic arthritis herself, Chopra is all too familiar with the energy expenditure of public performance.
Those in the chronic illness community often use the Spoon Theory to help convey the concept of limited energy stores. According to the community colloquialism, those with chronic disease only get a handful of spoons each day. Each spoon is an energy reserve.
In giving a spoon to one event or task, chronic illness sufferers take from energy they could be putting toward another event or objective -- which is why those with chronic illness must be strategic about the way they spend their spoons. For all the spoons spent on showing up that morning, Chopra expressed gratitude.
Before she left the stage, the inspiring Instagram influencer beamed in her emerald green dress, introducing musicians Melissa McMillan, Camille Trust, Arin Maya and Jackson Fitzgerald to sing an opening song. Co-written by Chopra, the singers harmonized words of “Surrender.”
“Light is inescapable. The stars found their way through the darkness to get to you.”
In reflection on the event, Chopra explained her own intention in opening the event on a song of empowerment. There was an intuitive knowing that told her to open on a song.
“Music allows you to process things that you don’t really have the words for,” she said. “Starting the day with that was a way to let people know they didn’t have to think about it. They just had to feel it.”
The feeling was palpable.
Minutes before the clock struck 11 a.m., five advocates prepared to speak about the challenges of living with an invisible illness. The discourse of “Panel One: Am I Sick Enough?” focused on the struggle of coping in silence, delving into widespread misunderstanding and the subsequent isolation experienced by those who manage the burden of illness alone.
The first panel was moderated by Komal Minhas, a cancer survivor, podcast host and one of Oprah’s Super Soul 100. Speakers included Mira Mariah, tattoo artist and disability activist, Eliz Martin, multiple sclerosis (MS) advocate, David Markovich, mental health advocate and founder of 18 Percent, and Larissa May, mental health advocate and founder of Half the Story.
May had created a successful online persona as a fashion industry professional. But years of quietly suffering with an autoimmune disorder and debilitating mental health issues brought her to a dark place. Ready to be vulnerable, she found relief when she finally shared the full story.
“Sharing my story empowered others to share theirs."
From there, May’s experience led her to connect with others afraid to share their struggles. The extent of invisibility in the mental illness community prompted her to create “Half the Story,” which provides insights and tools to navigate the mental health and the digital space simultaneously. She’s coined the term “digital wellbeing.”
Eliz Martin, a multiple sclerosis advocate who was diagnosed at age 26, discussed how the dialogue surrounding MS can neglect the reality of living with the condition. Verbal optimism, like the common quote, “I have MS but MS doesn’t have me,” abounds in her community.
“No, MS does have me,” Martin said. “I’m struggling every day with a disease that is incurable and progressive.”
Martin emphasized how important it is to be honest with herself and others about what she faces.
When patients are unable to share the truth of their struggle, they’re often expected to perform in social settings. This can create a sense of shame. Chronic illness advocate and amputee, Mira Mariah, agreed. “Shame and pain are best friends,” she said, bluntly. “It’s a toxic friendship, and they need to break up.”
“Transparency opens a door to vulnerability."..."Breaking that invisibility allows us to be real with others and express our own needs."
In the audience Q&A, an attendee with MS asked about transparency when applying to jobs. David Markovich, who founded 18 percent, a peer-to-peer community on Slack where those struggling with mental health issues could go to find connection and visibility, advised being open with prospective employers.
“You don’t want to work somewhere that won’t employ someone who is suffering,” he said.
Markovich learned that coping became easier when he sought relationships with those who understood what he was going through.
“The difference between sympathy and empathy defines how you know who your allies are."
Markovich’s statement drove home the panel’s central theme of transparency. In sharing with the world, he said people with chronic conditions can give others a chance to cultivate inclusive environments.
Following a brief break, the next panel focused on self-advocating with medical professionals. Moderated by wellpreneur and teacher Melanie Santos, the panel featured a diverse lineup of speakers: April Christina, endometriosis advocate, Dr. Tay Ahmed, pelvic pain specialist, Amy Lacey, founder of Cali-flour Foods and national best-selling author, and Dr. Darien Sutton, emergency medicine physician.
Dr. Sutton, now an attending physician at Northwell Health, developed his approach to patient care from early childhood experiences. He remembers feeling like doctors weren’t listening to his aunts, leading him to work to always understand a patient’s personal situation.
“When I’m in the room with a patient, I always ask two questions:
- Why today?
- What are you most afraid of?”
Dr. Sutton also recommends having a patient advocate attend doctor’s visits. He’s found that provides a more comprehensive picture and accurate diagnosis.
Autoimmune disease advocate, Amy Lacey, was 40 years old when she was diagnosed with pulmonary embolism. She was prescribed Coumadin, a blood thinner, which is also used in rat poison.
“Sometimes, the treatment is worse than the actual disease."
Since then, she’s pursued physicians who understood inflammation and the encouraged elimination diet — which allowed her to finally identify a grain intolerance.
Living with lupus, mixed connective tissue disease and Sjogren's syndrome, Lacey has found healing through food. Her company, Cali-flour Foods, focuses on gluten-free cooking.
Yet everybody is different, and there’s no one-size-fits-all treatment, Santos said.
“Chronic care doesn’t all look the same.”
After Lacey’s story, guests congregated in a well-decorated room to enjoy Chronicon’s bountiful lunch offerings from gluten-free food spot, The Little Beet.
Savory selections included rice, white beans and collard green salad, falafel, tofu, chicken, beets, turmeric tahini and avocado bean dip. Offering gluten-free, vegetarian and vegan options, the menu provided something for everyone.
The wall behind The Little Beet's lunch table promoted food as fuel. Photo by Ashley Lombardo
A woman shares her falafel, beet and white bean salad lunch. Photo by Ashley Lombardo
Attendees sit to discuss their experiences living with chronic illness over food meant to accommodate all dietary restrictions. Photo by Ashley Lombardo
Avocados with sesame seeds were a favorite among those in attendance. Photo by Ashley Lombardo
Servers pile plates with food, provided by The Little Beet, a restaurant that embraces tasty food that makes you feel good, too. Photo by Ashley Lombardo
One attendee shows their plate preferences. Photo by Ashley Lombardo
The third panel focused on food and chronic illness -- providing perspective on the practice of eating for health. Growing evidence suggests a close link between inflammation and many chronic health conditions including diabetes, metabolic syndrome, cardiovascular disease, cancer, rheumatoid arthritis, inflammatory bowel disease, asthma, and chronic obstructive lung disease, so many with chronic illnesses are learning to embrace a gluten-free lifestyle.
What became increasingly clear during the panel, however, was that there is no single optimal way for all to eat. When it comes to food, Chopra advised that following our own intuition is one of the most powerful things we can do.
Speaking alongside Chopra, Jessica Goldman Foung, author and spokesperson for the National Kidney Foundation, and Jennifer Esposito, actress, celiac advocate and New York Times best-selling author, shared their journeys with food.
In January of 2004, Foung was diagnosed with Lupus, an autoimmune disease that was attacking her kidneys and brain. Due to the “flare-up” of the disease, she became renal insufficient and eventually faced kidney failure. Her solution? Eating mindfully and excluding sodium intake at all costs, alongside medication and moral support.
Over a decade later, Foung now works as a full-time food writer, embracing a lifestyle that has officially taken her off of the kidney transplant list and launched into her a life that celebrates self-care through sustenance.
While Foung’s journey was one she began outside of the public eye, Esposito’s story is a bit different. The model-turned-actress had been working in the film industry for years before she discovered she had celiac disease.
During that time, she remembers having a “bag of tricks” with items like Pepto Bismal, ginger ale, and Xanax at the ready, just to get her through shoot days. Embracing the Atkins Diet, which excludes gluten-heavy foods like bread, pasta, and grains, for her role in the movie Crash, Esposito noted feeling significantly better. When she was finally diagnosed, Esposito was relieved to know there was an explanation for the way she felt.
Not everyone in the industry has been compassionate about her condition. In 2012, Esposito was put on leave from the show after they failed to understand her limitations due to her celiac condition. Esposito shared that the network didn’t treat her condition like a medical illness and did not accommodate a reduced schedule, which her doctor had prescribed.
In 2013, Esposito opened her own bakery in New York CIty’s East Village, creating confectionary treats for those with food restrictions. She wanted it to be a place where people could have fun with food, not fear it.
Both Foung and Esposito’s stories underscored one major lesson: while many of us may embrace different dietary practices, it doesn’t have to mean that food divides us. In fact, being open about our food practices can even be what brings us together.
“Food can be a source of connection. Instead of retreating with your food restrictions this holiday season, come forward with them. It takes you reaching out and educating.”
In reflection on the food panel, Chopra recalled how her nerves caught fire in the planning stages. It wasn’t because of the high-profile panelists; it was the sensitivity of the topic. She wanted guests to feel empowered around their daily food practices.
“I still sometimes feel so overwhelmed by food choices,” Chopra shared in an interview with MedTruth.
After a winding journey experimenting with various dietary lifestyles and habits, Chopra found what works for her — living and eating intuitively.
“I always say, ‘your body is your biggest teacher'...I really believe that.”
The fourth panel, “The Business of Being You,” focused on the role of the influencer in shaping the online culture of chronic illness.
For Chopra and others living with chronic illness, online platforms are powerful spaces to bring visibility, unite patients and learn about different conditions.
Moderator Blair Badenhop, brand strategist and copywriter, led the panel, which featured Paloma Kemak, diabetes advocate and blogger, Dani Velazquez, chronic illness advocate and model, and Healthline’s influencer marketing manager, Nancy Carl.
Audience members were interested in how to become an influencer with chronic illness, and Carl transparently shared tips and tricks. Healthline looks for influencers who have an intentional tone of voice and use empathy when communicating with their audience, Carl said.
In addition to voice and engagement, Carl also mentioned the importance of medically accurate information. All of Healthline’s influencers are carefully vetted, Carl said.
Influencers should be selective about their partner choices and intentional about the information they share. Bottom line: compassionate, conscious consumerism matters.
Moderated by Sabena Suri, co-Founder of BoxFox, the mid-day panel on vulnerability returned to the cycle of isolation commonly experienced by people with chronic illness.
Panelists included Dani Candray, alopecia advocate and Natural model, Suleika Jaouad, Emmy Award-winning writer and cancer survivor, Phillip Picardi, editor-in-chief of Out Magazine, and Jennifer Racioppi, astrologer and cancer survivor.
The conversation focused on the experience of deciding who to share with and the hardship of navigating these decisions. Most emphasized the burden of sharing when one doesn’t feel safe.
“Whenever you’re putting your personal life online, you change the dynamic of getting to know people because everyone will make their own assumptions,” Candray said.
Rather than letting people make assumptions, Candray shares about her alopecia areata, a condition she was diagnosed with at age two. On some days, it’s harder than others.
“I’m still learning that I’m not a burden."
But sharing isn’t the only significant step. It’s also important to find the right listeners, who become vital in shaping support systems. That’s how Racioppi learned to distinguish her choir from her posse.
“The people who sincerely want to help us don’t always know how,” said Racioppi.
Racioppi further explained that her posse included people who showed up for her successes, with whom she could grab a bite to eat or attend a movie. Her choir, on the other hand, is filled with those who will readily listen to her truth -- heavy or messy as it may be. Real choir members lend a listening ear when we need it and are willing to discover what we need at the personal level to feel seen, heard and loved.
When the mic went to Picardi, whose unwavering confidence emanated from the very edges of his geometrically-printed, black and blue shirt, he initially joked about his being on the panel beside such enormously inspiring people. His humorous candidness called to mind the idea that chronic illness advocacy doesn’t have to look like being a best-selling author with a million Instagram followers (though we hail those advocates for what they bring to the movement!).
Coping with chronic illness doesn’t look one way. As an editor for Out magazine, Picardi explains the way he’s had to find comfort in transparency -- bringing even his own skincare and makeup products to photoshoots.
The same goes for family interactions, too. When Picardi’s mom recommended he drink copious amounts of celery juice to cure his psoriasis, he wasn’t about to conform. Oh-so-bluntly, he assured his mother he didn’t require a touted, new wave health elixir to cure him of a condition that flares up when he’s under stress.
Gesturing towards his arms, Picardi proudly owned his psoriasis, explaining that Out magazine just released “The 100 Issue.” His comfort in his own skin was loud and inspiring. That’s the way he lives his life; He doesn’t let the state of his psoriasis get in the way of how he exists in the world.
“It’s liberating to not feel like you have to abide by certain standards to value yourself,” Picardi said.
Jumping from radical self-love to the prospect of intimate love, “Panel Six: Chronically Capable of Love” filled the room with laughter.
Multiple food allergies and sensitivities have made navigating the world at large a unique learning experience for Jenna Schrek, food allergy and Low FODMAP expert. She initially created her blog “No Whey Lady” to chronicle her dairy-free, gluten-free, corn-free recipes, but since then, she has furthered her knowledge of healthy living — graduating from a holistic nutrition program and exploring alternative wellness practices like yoga and reiki.
While she has expanded beyond food-focused wellness practices alone, she still celebrates her passion for food — sharing her creations on her Instagram page.
One thing that has been made particularly interesting by Schrek’s food practices is her love life. Since leaving a long term relationship, she shared that prospective partners she met on dating apps wouldn’t always be game for navigating her allergies. She’s learned how to be blunt about what she needs from a guy for her own wellbeing. “If they want a kiss,” she explained, “they’ll have to abstain from dairy consumption for five hours before the date.”
Schrek even created her own method, which she included in a recent piece she wrote for Cosmopolitan. Her humor comes across in the article just as it does in real life, as she explains that anyone who mentions pizza or cheese in their dating app bio is a “hard Swipe Left.”
Setting boundaries is her M.O., and if others won’t honor them, she sets her sights elsewhere. She also applies this approach to men who won't use a specific kind of condom, as Schrek is allergic to latex.
“When you find the right person, they are willing to use the right condoms."
Nicole Jardim, women’s hormonal health expert, Aimee Raupp, acupuncturist and best-selling author, and Dr. Jessica Shepherd, board certified OB-GYN, also spoke on the panel about living and loving with chronic illness.
The conversation shamelessly shifted from first dates to sexual health, which, as Dr. Shepherd asserted, is an essential part of wellbeing.
Jardim stressed the importance of being in touch with hormonal health, nothing that each person experiences hormones differently.
“We can learn to live in a more embodied way by being aware of the hormonal shifts as they are happening."
Tracking hormonal health and managing sexual wellness may be as simple as logging the menstrual cycle in an app, or it might mean regular appointments to an acupuncturist.
Sometimes, problems with a partner can arise when we fail to address our own.
One thing we can do to better understand our emotions is to get in touch with where those emotions are living. Headache pain communicates an ail that’s different than pelvic pain. Aimee Raupp believes that when energy and circulation become blocked in certain regions, pain is the result. By resolving the energetic blockages, either through cognitive therapy, intuitive living, acupuncture appointments, or other acts of self-compassion, we can bring a more compassionate self to our relationships, while managing chronic conditions.
The room fell quiet as style icon and final speaker, Stacy London, took her seat on stage.
Intended to be a more intimate conversation with Chopra, the interview began as a tearful Chopra addressed how much it meant to her to see so much vulnerability in the room.
London is well-known for her thick-skinned bluntness, but a softer side of her emerged behind her bold, red blazer and colorful pantsuit as she recalled the way staying silent about her illness made coping with it more challenging.
Whether on the set of TLC show What Not to Wear or navigating the fashion scene and life beyond it, London has found strength in advocating for herself and making her health a priority as someone living with psoriasis and psoriatic arthritis.
Even as a strong-willed career woman, it took her years to be confident and assertive in communicating her boundaries and needs.
London recalled being a child and showing her psoriasis flare-up to her mother, only to hear the words “what’s wrong with you?”
As far as London can remember, something has always been “wrong” with her. So when asked about how she’s learned to grieve a once-healthy self, London admitted that, for her, the grief wasn’t so much missing a healthy self but wishing she had a healthy self to grieve.
Ultimately, the process of coming to terms with worsening conditions has meant constantly releasing attachment to who she once was.
“It’s about constantly learning to let go of who you were to be who you are."
“But sometimes, it’s hard to let go of who you were,” she added earnestly.
The room seemed to hang on her words as they echoed in a space of resonance. The sincerity of her own reflection hit harder than any piece of advice on wellness rituals could have. London wasn’t there to preach. She was there to admit that, strong as she is, hard days happen.
In a way, the solidarity in that shared experience embodied what Chronicon was all about: radical self-acceptance amid the low points of living with long-term conditions.
As the event came to a close, a still-joyful Chopra offered her final remarks. For being the first event of its kind, Chronicon came in as a true force, providing support and connection for a community that is too often unseen.
Providing a final bookend that paralleled the event’s musical opening, an all-female singing group, dressed in white, emerged one by one from the back of the room and onto the stage. The Resistance Revival Chorus harmonized and radiated a lightness that would dispel even the darkest of nights.
While their songs continued, the tempo picked up, calling audience members to join in with rhythmic claps and celebratory dance which was continued in the closing reception. Even Nitika joined in on the dancing as the grinning performers around her cajoled within an array of artisanally-crafted charcuterie boards. The time for a final mingle among friends both old and new had come -- a moment to reflect on the collectively shared experience.
The Resistance Revival Chorus claps as their song picks up in pace, inviting audience members to clap, too. Photo by Ashley Lombardo
An assortment of gluten-free snacks splay on a charcuterie board in the reception room as Chronicon comes to an end.
Song leader of the Resistance Revival Chorus shares a moment of bliss with Chronicon founder Chopra as the audience makes their way in to the reception room, following the day's events.
A charcuterie board provided in the event's closing reception was complete with crackers and sundried tomato basil dip. Photo by Ashley Lombardo
And though the Edison bulbs and brightly-colored details of the gathering place itself had called in a sense of light throughout the day, it was clear that the glow was more than physical. The lyrics to the opening song -- “Light is inescapable. The stars found their way through the darkness to get to you” -- had a different sense of truth to them.
There, in that space, looking out over a small sea of inspired beings, the inextinguishable light of togetherness gave way to a more profound revelation:
No matter what our ails, human connection is the greatest remedy we have.
