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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.


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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.

Our newsletter that womansplains the week
4min read
Lifestyle

Going Makeupless To The Office May Be Costing You More Than Just Money

Women have come a long way in redefining beauty to be more inclusive of different body types, skin colors and hair styles, but society's beauty standards still remain as high as we have always known them to be. In the workplace, professionalism is directly linked to the appearance of both men and women, but for women, the expectations and requirements needed to fit the part are far stricter. Unlike men, there exists a direct correlation between beauty and respect that women are forced to acknowledge, and in turn comply with, in order to succeed.


Before stepping foot into the workforce, women who choose to opt out of conventional beauty and grooming regiments are immediately at a disadvantage. A recent Forbes article analyzing the attractiveness bias at work cited a comprehensive academic review for its study on the benefits attractive adults receive in the labor market. A summary of the review stated, "'Physically attractive individuals are more likely to be interviewed for jobs and hired, they are more likely to advance rapidly in their careers through frequent promotions, and they earn higher wages than unattractive individuals.'" With attractiveness and success so tightly woven together, women often find themselves adhering to beauty standards they don't agree with in order to secure their careers.

Complying with modern beauty standards may be what gets your foot in the door in the corporate world, but once you're in, you are expected to maintain your appearance or risk being perceived as unprofessional. While it may not seem like a big deal, this double standard has become a hurdle for businesswomen who are forced to fit this mold in order to earn respect that men receive regardless of their grooming habits. Liz Elting, Founder and CEO of the Elizabeth Elting Foundation, is all too familiar with conforming to the beauty culture in order to command respect, and has fought throughout the course of her entrepreneurial journey to override this gender bias.

As an internationally-recognized women's advocate, Elting has made it her mission to help women succeed on their own, but she admits that little progress can be made until women reclaim their power and change the narrative surrounding beauty and success. In 2016, sociologists Jaclyn Wong and Andrew Penner conducted a study on the positive association between physical attractiveness and income. Their results concluded that "attractive individuals earn roughly 20 percent more than people of average attractiveness," not including controlling for grooming. The data also proves that grooming accounts entirely for the attractiveness premium for women as opposed to only half for men. With empirical proof that financial success in directly linked to women's' appearance, Elting's desire to have women regain control and put an end to beauty standards in the workplace is necessary now more than ever.

Although the concepts of beauty and attractiveness are subjective, the consensus as to what is deemed beautiful, for women, is heavily dependent upon how much effort she makes towards looking her best. According to Elting, men do not need to strive to maintain their appearance in order to earn respect like women do, because while we appreciate a sharp-dressed man in an Armani suit who exudes power and influence, that same man can show up to at a casual office in a t-shirt and jeans and still be perceived in the same light, whereas women will not. "Men don't have to demonstrate that they're allowed to be in public the way women do. It's a running joke; show up to work without makeup, and everyone asks if you're sick or have insomnia," says Elting. The pressure to look our best in order to be treated better has also seeped into other areas of women's lives in which we sometimes feel pressured to make ourselves up in situations where it isn't required such as running out to the supermarket.

So, how do women begin the process of overriding this bias? Based on personal experience, Elting believes that women must step up and be forceful. With sexism so rampant in workplace, respect for women is sometimes hard to come across and even harder to earn. "I was frequently assumed to be my co-founder's secretary or assistant instead of the person who owned the other half of the company. And even in business meetings where everyone knew that, I would still be asked to be the one to take notes or get coffee," she recalls. In effort to change this dynamic, Elting was left to claim her authority through self-assertion and powering over her peers when her contributions were being ignored. What she was then faced with was the alternate stereotype of the bitchy executive. She admits that teetering between the caregiver role or the bitch boss on a power trip is frustrating and offensive that these are the two options businesswomen are left with.

Despite the challenges that come with standing your ground, women need to reclaim their power for themselves and each other. "I decided early on that I wanted to focus on being respected rather than being liked. As a boss, as a CEO, and in my personal life, I stuck my feet in the ground, said what I wanted to say, and demanded what I needed – to hell with what people think," said Elting. In order for women to opt out of ridiculous beauty standards, we have to own all the negative responses that come with it and let it make us stronger– and we don't have to do it alone. For men who support our fight, much can be achieved by pushing back and policing themselves and each other when women are being disrespected. It isn't about chivalry, but respecting women's right to advocate for ourselves and take up space.

For Elting, her hope is to see makeup and grooming standards become an optional choice each individual makes rather than a rule imposed on us as a form of control. While she states she would never tell anyone to stop wearing makeup or dressing in a way that makes them feel confident, the slumping shoulders of a woman resigned to being belittled looks far worse than going without under-eye concealer. Her advice to women is, "If you want to navigate beauty culture as an entrepreneur, the best thing you can be is strong in the face of it. It's exactly the thing they don't want you to do. That means not being afraid to be a bossy, bitchy, abrasive, difficult woman – because that's what a leader is."