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Why I Started a Podcast to Shine a Light on Invisible Illness Stories

5min read
Health

Made Visible is a platform that brings to light real, raw, and significant stories from people experiencing from a range of invisible illnesses, from Hodgkin's Lymphoma to bipolar disorder. These people look perfectly healthy on the outside but are grappling with chronic conditions that make "normal" life anything but normal.


__________

I'm a born and raised Manhattanite. I spent ten years working in marketing, public relations, and event production at companies such as Bobbi Brown and Avon before I became a business coach and consultant. Starting my own business was something I always wanted to do, but the pieces really fell into place due to my health journey.

When I was 10 years old, I was diagnosed with Hyper IgE, also known as Job's syndrome. It's an extremely rare immune deficiency that caused me to experience skin issues and lung problems, among other things. When I was diagnosed, I was focused on trying to be a "normal" kid. I never wanted to be defined by my health issues, so I spent the first 27 years of my life hiding from my diagnosis and just dealing with symptoms as they came up.

That all changed in late 2012, when I had a lobectomy to remove a quarter of my right lung. I'd seen a pulmonologist because I found myself out of breath and on the verge of collapsing whenever I walked anywhere. It turns out, I had a cyst the size of a golf ball in my right lung. We have no idea how long it had been there. The surgery to remove it was risky but medically necessary, and the infectious disease team at the National Institutes of Health (NIH) had advised me to proceed with it. This was such a pivotal time in my life, and I came out of the surgery grateful to be alive.

The surgery--and recovery from it--turned my world upside down, and it was hard to hide and ignore my health any longer. I started sharing with friends, writing about my story, and owning my health (including visiting the NIH every year, something I had resisted for a long time). I also started eating healthier, meditating, practicing yoga, and creating a lifestyle that allowed me to prioritize these things. This was when I started to acknowledge that I needed a career that was more fulfilling and provided me with more flexibility. In November 2014, I launched my coaching business.

I'm now seven years out of surgery, and managing my health is now a big part of my life and story. There have been challenging moments, but I am very fortunate to have my team at the NIH, a few doctors in NYC, and friends and family to support me--something that's a lot easier for them now that I'm not hiding what I'm going through.

As I finally came out of my shell, I started to seek out other people who also manage invisible illnesses. Through my conversations with these people, and my own experiences, I realized that people don't know what it's like to live with an invisible illness. It was really challenging for me to find content around invisible illness that I related to; most of what I found didn't acknowledge that illness is only one part of someone's story. As an avid podcast listener, I decided this was my opportunity to create the content I wanted to hear. With this in mind, I set out to create a platform to showcase the stories of people living with invisible illness. In July 2018, my podcast, Made Visible, was born.

Made Visible is a podcast that gives a voice to people with invisible illnesses. It aims to change the conversation around invisible illnesses, helping those who experience them —whether as patients, caregivers, or friends or family members — feel more seen and heard.

The goal of Made Visible is to help people living with invisible illnesses feel less alone as they strive to create a "normal" life. It aims to create a new awareness of how friends, family, and others can be sensitive and supportive to people who live with these illnesses — especially when most people have no idea what's appropriate or helpful, and don't know where to turn for answers.

People with invisible illnesses may look fine, but that doesn't mean that we feel fine or aren't sick. Most of the symptoms that I deal with, you would never be able to see when I walk down the street. Talking about my invisible illness is something I've only done in the past few years, but it has been extremely freeing, and it's helped my friends and family learn how to support me better. I want the same for others who are silently struggling. I hope that through Made Visible I can teach people to be compassionate to everyone, given that we don't know all that people around us are going through.

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