Made Visible

Made Visible

www.madevisiblepodcast.com
On Made Visible, we share real, raw stories from people who seem fine, but aren’t.
33. Ally Hilfiger, Changing the Lenses on Her Experience with Lyme Disease
Mar 5 • 40 min
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…
32. Melissa Marans, Rebuilding Her Body and Reorganizing Her Life with Dermatomyositis
Feb 26 • 45 min
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…
31. Carly Stein, Healing Her Health with Products from the Hive
Feb 19 • 51 min
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…
30. Letty Cottin Pogrebin, Providing a Guide for Thoughtfully Supporting People Who Are Sick
Feb 12 • 47 min
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…
29. Genevieve Gorder, Designing a Life with Hashimoto’s Thyroiditis and Lyme Disease
Feb 5 • 52 min
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…
28. Monique Gore-Massy, Finding Hope and Purpose After Her Lupus Diagnosis
Jan 29 • 41 min
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…
27. Norine Spero (my Mom), Caregiving by Letting Me Take the Lead
Jan 22 • 34 min
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…
26. Nitika Chopra, Navigating Entrepreneurship, Psoriasis, and Self-Love with Her Heart as Her Guide
Jan 15 • 43 min
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…
25. Gunnar Esiason, Living with Cystic Fibrosis with a Healthy Dose of Humor
Jan 8 • 49 min
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…
24. Dr. Alexandra Freeman, Providing Patient-Focused Care for Primary Immune Deficiencies
Dec 18, 2018 • 35 min
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…
23. Becca Skolnick: Honoring her Mother’s Advice about Parenting with a Chronic Illness
Dec 11, 2018 • 27 min
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…
22. Akilah Cadet, Advocating for Herself As She Searches for a Primary Diagnosis
Dec 4, 2018 • 34 min
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…
21. Tracy Shaw, A Mother on a Mission to Find Answers for a Daughter with CVID
Nov 27, 2018 • 45 min
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…
20. Sah D’Simone, Seeking (and Giving) Compassion while Managing Depression
Nov 20, 2018 • 36 min
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…
19. Jan Wiese, Caregiving with Grace and Intention for a Daughter with Job’s Syndrome
Nov 13, 2018 • 52 min
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…
18. Emily Sause, Embracing Curiosity and Awareness while Living with Narcolepsy
Nov 6, 2018 • 48 min
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…
17. Joe Dinardo, Navigating Brain Surgery and Caregiving Through His Meditation Practice
Oct 30, 2018 • 57 min
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…
16. Jen Pastiloff, Listening Fiercely with Profound Hearing Loss and Tinnitus
Oct 23, 2018 • 46 min
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…
15. Lauren Chiarello, Cultivating Community as a Two-Time Cancer Survivor
Oct 16, 2018 • 39 min
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…
14. Jodie Cariss, Challenging Therapy’s Status Quo with Self Space
Oct 9, 2018 • 32 min
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…
13. Anthony Piccione, Using Theater to Break Down Stigma around Autism and Anxiety
Oct 2, 2018 • 37 min
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…
12. Amy Grantham, Chronicling Her Experience with Cancer through Art
Sep 25, 2018 • 52 min
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…
11. Aaron Curtis, Finding Answers with Cutaneous Polyarteritis Nodosa
Sep 18, 2018 • 25 min
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…
10. Mallory Gothelf, Giving Her Depression and Anxiety a Purpose
Sep 11, 2018 • 41 min
Mallory Gothelf was diagnosed with general anxiety and major depressive disorder when she was 15. At that age, Mallory didn’t realize that recovery would be a long road or that it would ignite her passion for giving back and being a voice for others. On…
9. Margie Strauss, Finding Her Team with Multiple Sclerosis
Sep 4, 2018 • 32 min
Margie Strauss felt a strange, electric pain in her body while on vacation with her family in the summer of 2001. After being admitted to the hospital, she was diagnosed with multiple sclerosis (MS) that very same day. Quickly, the nuisance that had…
8. Matt Glazer, Finding His Rhythm with Bipolar Disorder
Aug 28, 2018 • 35 min
When Matt Glazer calls his bipolar disorder his superpower, it’s not just a catchphrase. He genuinely means it. From using his experience to deepen his communication skills, produce creative work, or reframe the idea of “failure,” Matt is serious about…
7. Tiffany Dyba, Navigating Breast Cancer In Her 30s
Aug 21, 2018 • 46 min
Tiffany Dyba first felt a lump in her left breast while on vacation with her husband in Iceland. When she returned home, she went for a mammogram and ultimately discovered that she had Stage 1 breast cancer. On this episode, Tiffany and I talk about the…
6. *Bonus Episode* Behind Closed Doors with Danielle Diamond
Aug 16, 2018 • 8 min
In this bonus episode, Danielle Diamond shares a powerful essay, Behind Closed Doors, about an early memory of her mom, who had bipolar disorder and depression. This essay is poignant, honest, and punctuated with humor. It provides a window into the…
5. Danielle Diamond, Speaking Up about Her Mom’s Mental Illness
Aug 14, 2018 • 44 min
For Danielle Diamond’s entire childhood, her mom struggled with bipolar disorder and depression. As she grew older, and especially after her mom died by suicide when Danielle was just 21, she grew to better understand the reality of her mom’s experience.…
4. Phoebe Lapine, Finding Healthy Hedonism with Hashimoto’s Thyroiditis
Aug 7, 2018 • 35 min
When Phoebe Lapine was first diagnosed with Hashimoto’s Thyroiditis, she didn’t want to hear it. As time went by, she eventually came to terms with her diagnosis and discovered she could use her skills as a chef and recipe developer to heal her body.…
3. Carly Alterman, Caregiving for Lyme Disease
Jul 31, 2018 • 38 min
Growing up, Carly Alterman loved that she was able to spend a lot of time with her dad, Harvey, who had retired from his dentistry practice due to chronic Lyme disease. Starting in third grade, Carly, along with her mother and brother, acted as a primary…
2. Christina Blacken, Living with Pre-Diabetes
Jul 24, 2018 • 45 min
For Christina Blacken, an early pre-diabetes diagnosis was the wake-up call she needed to take control of her health and her life. Not taking “no” for an answer, she did whatever it took to get the answers she needed for her health, eventually venturing…
1. Introduction with Harper Spero
Jul 17, 2018 • 13 min
I’m so excited to launch the first episode of Made Visible, an idea which has been a long time in the making. I didn’t always know that I wanted to launch a podcast, but I did know that I needed to do something to make people with invisible illnesses feel…