Made Visible

Emily Fletcher found out she was having a miscarriage on her way to teach a meditation retreat. Or so she thought. As it turned out, when she had an ultrasound, the baby had a heartbeat. But at the three-month mark, she was told--again--that she had miscarried. This time, it was true. On today's episode, Emily and I share a lot of laughs as we talk about how she broke the news of her second pregna...

Author Bob Martin writes books for children that bring more understanding to the chronic diseases and disorders that kids face. Bob lost a granddaughter to a highly terminal brain tumor and has a grandson who manages ADHD, so he writes from the heart on these issues. On today's episode, Bob and I talk about his lifelong dedication to advocating for children, the unique role that grandparents can p...

Ally Hilfiger was bitten by a tick at age seven and battled severe physical and neurological symptoms throughout her childhood, but she wasn't diagnosed with Lyme until after a hospitalization at age 18. On today's episode, Ally and I talk about why she wrote a book chronicling her experience, the shift that occurred when she chose homeopathic treatments and lifestyle changes over antibiotics, and...

For most of her life, Melissa Marans didn't have an invisible illness. That all changed in 2015, when she began showing signs of rapidly worsening muscle weakness and fatigue. She went to see her doctor, and in a week, had a diagnosis: a rare autoimmune disease called dermatomyositis. On today's episode, Melissa and I talk about the challenges she has faced, why she went silent on social media for...

Before discovering bee products, Carly Stein was the person who was always sick. That all changed when she discovered magical natural products like propolis, royal jelly, bee pollen, and honey. On today's episode, Carly and I talk about what led her to found Beekeeper's Naturals, why education about bees is such an important part of her company's mission, and how her own health has improved since...

About ten years ago, Letty Cottin Pogrebin (a founding editor of Ms. Magazine) was sitting in the waiting room at Memorial Sloan Kettering when she had the idea for a book. On today's episode, Letty and I talk about her experience with breast cancer, and why it inspired her to write How to Be a Friend to a Friend Who's Sick. We talk about the difficulty of finding the right words when you learn so...

Interior design star Genevieve Gorder wants to live in the light, not in her illness. What does that mean, exactly? For Genevieve, who has both Lyme disease and Hashimoto's thyroiditis, it means refusing to stake her identity in her health challenges. On today's episode, Genevieve talks to me about the role that learning plays in her journey with Lyme and Hashimoto's, how a home can be healing, an...

Monique Gore-Massy is a lupus survivor living purposefully. At the beginning of her journey, her debilitating symptoms diminished her sense of hope, tested her faith, and challenged her identity. On today's episode, Monique and I talk the incredible support system that helped lift her out of the darkest period of her condition, her advice for navigating relationships and chronic illness, and why--...

This week, I'm so thrilled to present a very special guest: my mom, Norine Spero, who has been a caregiver for me since I was born. My mom and I are very close, so I found it really incredible that there were parts of her story--and my story--that I had never heard before. On this episode, we talk about the long journey to obtain my Job's syndrome diagnosis, the doctors who listened to me (and tho...

Nitika Chopra was diagnosed with psoriasis, a chronic skin condition, at age 10. At 19, she was also diagnosed with psoriatic arthritis. On today's episode, Nitika and I talk about the emotional and physical challenges of growing up with a chronic illness, and how she came to embrace little acts of self-love--even if she didn't call it that at the time. We also discuss her faith in God, her shift...

Gunnar Esiason believes cystic fibrosis drug development is in its golden age, and that's good news for people like him. Gunnar was diagnosed with cystic fibrosis (CF) at age two, and since then, he's relied on an intensive treatment regimen to manage his symptoms. On today's episode, Gunnar and I talk about why he feels a sense of promise around CF research, how he copes with his condition using...

As a physician at the NIH, Dr. Alexandra Freeman treats patients with rare diseases who have exhausted the easy options. On today's episode, Dr. Freeman and I talk about what makes the NIH so different from other medical organizations--and how that impacts research and medical discoveries. We also discuss the challenging and rewarding aspects of her job, and why patient-focused care is so importan...

While sorting through her mother's belongings, Becca Skolnick made an interesting discovery: a printout of an article her mother had written. The article mirrored her real life in so many ways; it was advice that her mother had put into practice over the course of her 32-year journey with scleroderma. On today's episode, Becca and I talk about who her mom was--a person who had a remarkable way of...

Akilah has been diagnosed with pericarditis, coronary artery spasms, and orthostatic hypotension, but she's still searching for a reason why she's experiencing intense and chronic pain on the left side of her body. On today's episode, we talk about how why she no longer thinks of her health journey as a temporary bump in the road, why she decided to start talking about her health with clients, and...

In pursuit of answers for her daughter, Tracy Shaw went on a diagnostic odyssey. Thanks to Tracy's research, using data from Madison's many hospitalizations and visits with 21 doctors, Madison was diagnosed with common variable immune deficiency (CVID) at age 13. On today's episode, Tracy and I talk about the judgement she faced as a single parent and caregiver, why she was inspired to tell her st...

In his mid-twenties, Sah D'Simone's life as he knew it changed in an instant, and he entered the darkest episode of depression he'd ever had. Realizing that his mindset had to shift, Sah embarked on a journey of self-healing and compassion-seeking that led to his career as a meditation teacher, author, coach, and speaker. On today's episode, Sah and I talk about the moment he realized meditation h...

When Lucy Wiese was three years old, she was diagnosed with a rare disease called Job's Syndrome (or Hyper IgE Syndrome). For Jan Wiese, Lucy's mom, that was the beginning of her journey as a full-time caregiver. On today's episode, Jan and I talk about the trajectory of her daughter's serious illness and the experimental treatment Lucy received at the NIH, how she and her husband have navigated c...

When Emily Sause first started experiencing symptoms of narcolepsy in college, she wasn't even sure what was happening. It wasn't until she asked students and professors, who confirmed that she had been sleeping in class, that she realized something wasn't right. She was officially diagnosed with narcolepsy, and since then, has sought both self-awareness and acceptance of her condition. On today's...

When Joe DiNardo discovered he'd been living with a brain tumor for almost two decades, he relied on his meditation practice to help him face his own mortality. Several years later, when his wife Marcia was diagnosed for Stage IV pancreatic cancer, he relied on that practice once again to help him find his way as a loving caregiver. On today's episode, Joe and I discuss why brain surgery was life-...

Jen Pastiloff has built her identity and career around connecting with people. She also has profound hearing loss and tinnitus and is deaf without her hearing aids. As a result, she's had to cultivate other ways of understanding and hearing. On today's episode, Jen and I talk about the specific challenges that come with tinnitus and hearing loss, the assumptions people make if they don't know that...

When Lauren Chiarello was 23 years old, she was diagnosed with Hodgkin's lymphoma. Now over nine years in remission, Lauren is deeply involved in cancer advocacy at Memorial Sloan Kettering. From speaking at nurse orientations to being a resource for patients, one thing is clear: Lauren believes that by sharing our stories, we cultivate community. On this episode, Lauren and I talk about her journ...

When you picture a therapy office, you might imagine something tucked away in an office building. Self Space, founded by Jodie Cariss, is just the opposite. With its storefront location, the modern therapy practice is like nothing you've encountered before. And that's 100% intentional, because Jodie wants to normalize the idea that it's okay to talk about how we feel. On today's episode, Jodie and...

When Anthony Piccione was just a year-and-a-half old, he was diagnosed with autism. In his teenage years, he was also diagnosed with anxiety and mood disorder not otherwise specified. Now, Anthony is a playwright and actor, and uses art to bring awareness to the situations he's experienced. On this episode, Anthony and I talk about the role writing plays in his life, why he's committed to breaking...

For artist Amy Grantham, being diagnosed with breast cancer at 31 was life-changing in every sense of the word. It wasn't just that she underwent two lumpectomy surgeries and had to make hard decisions about fertility. Having cancer also rearranged her priorities. She chronicled her experience through her blog, "Boo Cancer, You Suck," and a feature film, Lily . On today's episode, Amy and I talk a...

Aaron Curtis was diagnosed with cutaneous polyarteritis nodosa (CPAN) in 2015. Like many people with rare diseases, his path to a diagnosis wasn't routine. Once he finally had a diagnosis, he was left with the task of managing his painful flare-ups while working full-time and also pursuing a writing career. On this episode, Aaron and I talk about the adjustments he has made to help manage his illn...