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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.

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3min read
Self

I Have Been Bullied Both At School and At Work. Here's What It Taught Me

Starting with a little background, I am an anti-bullying advocate and have recently graduated from The Parent Leadership Training Institute, where as part of our studies we were asked to come up with a community project close to our hearts and put it into action. My cause was bullying, and I began a blog and Facebook page to address issues pertaining to all forms of bullying. Implementing this project was followed by a thre- minute speech to my peers, and, after all this, here is what I have learned about bullying.


Bullying makes people feel bad about themselves, leading to feelings of inadequacy, low self-esteem and even physical symptoms. The repercussions of bullying can cause people to miss school or work as well as countless other negative side effects.

I have been bullied both at school and at work, and I know of others who have suffered the same plight. It is not fun!

My first bullying experience was in seventh grade as a young teen. There was a group of three "mean girls" who harassed me and, I later found out, several of my friends; they thought it was funny to pick on others about their clothes, their looks or whatever else they could come up with (who knows). It felt awful at the time. Supposedly, I was chosen to get picked on because they claimed I bought my clothes at the Goodwill. That wasn't true, but really who cares? Why they were picking on me was never really the point. Luckily, after a while, the meanies went on to the next victim(s) like a never-ending cycle. I tend to think once a bully, always a bully, which goes to show how good a lifestyle that is, because those "mean girls" never amounted to much. In hindsight, I feel sorry for them. Watch the movie The Gift if you're really curious about what happens to bullies when they grow up.

And bullying was not just an issue when I was a teen, since then nothing much has changed. My own nephew was bullied in eighth grade, and he recently talked to me in depth about of how the bullying took a toll on him. Especially because I had the same experience, I could relate to him in ways that some others couldn't. Like reliving my own memories, I was incredibly broken up to hear how it made him feel.

Even worse than that, bullying does not end in the school yard. Employees are being bullied on the job at an alarming rate. When you are bullied on the job as an adult, it taken an even bigger toll. Further it doesn't just go away like those middle school "mean girls." Unless you can quit your job, you might just be stuck. There are all kinds of physical symptoms, stomach pains, migraines and even panic attacks. Beyond the physical, people's mental and emotional state is extremely sensitive to bullying, and as a result work performance might suffer. Furthermore, it might feel like there is no recourse, no one to believe you. You can hope that the HR Department is willing to listen and do something about it, but the whole process can be so disheartening. And in the hierarchical corporate environment, sometimes the bully seems to get ahead and you are left lagging behind in a subservient position. This is what happened to me as a victim of workplace bullying. It started with me being told by a co-worker that my boss was following me to the bathroom, staring down the hall whenever I left my desk to make sure I came right back to my seat. Then it was standing over me as I typed, ordering me to get in a car with them, not allowing me to sit somewhere if it wasn't within their sight. The list of offenses could go on endlessly. There were times I felt like I couldn't breathe. And then, the bully torturing me got a promotion. Like the character of Miranda Priestly in The Devil Wears Prada, the classic bully is revered by her peers, despite the fact that all of her employees are terrified of her. Yet, she is in a role of high stature and praised as a bully. We live in a culture that is not only complacent in the existence of bullies, but one that actively allows them to thrive.

It makes you realize how unfair life can be. Of course, no one said that life would be fair; maybe you just assumed that bad people would not get ahead. But, they do. Even now, I cannot help but to shake my head in disbelief. I often wonder what makes a person feel the need to laud their power over another. Are they insecure? Were they bullied themselves? They must feel bad about themselves in some way? Do they feel the need to do this to make themselves look good? Whatever the reason, it certainly isn't nice at all. I have found myself at different times in my life standing up for people who have been bullied around me. And I certainly do not allow anyone to treat me in any way that I find disrespectful. I truly believe in karma, and I tell myself that at some point in time, the bullies will get it back in some way. I have seen it happen, and in the meantime, I just say to myself "What goes around, comes around."

Bullying shows no sign of slowing down, and in this day and age, it's even worse than I have experienced in the past. Cyber bulling, rumors, fist fights, knifes, guns and other forms of both mental and physical cruelty, it truly sickens me. I know that I cannot save everyone, but I try to be an advocate as much as possible and encourage others to do so as well. NO ONE SHOULD BULLIED! It is disgraceful to say the least. You should always practice grace as much as you can. With every person who chooses to do so, the world gets a little bit better. I will be writing more on this topic on a regular basis; I feel it helps to talk about this subject aloud and spread the word. and, if nothing else, be kind.