5min readHealth 06 July 2019
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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4 Min Read
During a recent meeting on Microsoft Teams, I couldn't seem to get a single word out.
When I tried to chime in, I kept getting interrupted. At one point two individuals talked right over me and over each other. When I thought it was finally my turn, someone else parachuted in from out of nowhere. When I raised and waved my hand as if I was in grade school to be called on (yes, I had my camera on) we swiftly moved on to the next topic. And then, completely frustrated, I stayed on mute for the remainder of the meeting. I even momentarily shut off my camera to devour the rest of my heavily bruised, brown banana. (No one needed to see that.)
This wasn't the first time I had struggled to find my voice. Since elementary school, I always preferring the back seat unless the teacher assigned me a seat in the front. In high school, I did piles of extra credit or mini-reports to offset my 0% in class participation. In college, I went into each lecture nauseous and with wasted prayers — wishing and hoping that I wouldn't be cold-called on by the professor.
By the time I got to Corporate America, it was clear that if I wanted to lead, I needed to pull my chair up (and sometimes bring my own), sit right at the table front and center, and ask for others to make space for me. From then on, I found my voice and never stop using it.
But now, all of a sudden, in this forced social experiment of mass remote working, I was having trouble being heard… again. None of the coaching I had given myself and other women on finding your voice seemed to work when my voice was being projected across a conference call and not a conference room.
I couldn't read any body language. I couldn't see if others were about to jump in and I should wait or if it was my time to speak. They couldn't see if I had something to say. For our Microsoft teams setting, you can only see a few faces on your screen, the rest are icons at the bottom of the window with a static picture or even just their name. And, even then, I couldn't see some people simply because they wouldn't turn their cameras on.
If I did get a chance to speak and cracked a funny joke, well, I didn't hear any laughing. Most people were on mute. Or maybe the joke wasn't that funny?
At one point, I could hear some heavy breathing and the unwrapping of (what I could only assume was) a candy bar. I imagined it was a Nestle Crunch Bar as my tummy rumbled in response to the crinkling of unwrapped candy. (There is a right and a wrong time to mute, people.)
At another point, I did see one face nodding at me blankly.
They say that remote working will be good for women. They say it will level the playing field. They say it will be more inclusive. But it won't be for me and others if I don't speak up now.
- Start with turning your camera on and encouraging others to do the same. I was recently in a two-person meeting. My camera was on, but the other person wouldn't turn theirs on. In that case, ten minutes in, I turned my camera off. You can't stare at my fuzzy eyebrows and my pile of laundry in the background if I can't do the same to you. When you have a willing participant, you'd be surprised by how helpful it can be to make actual eye contact with someone, even on a computer (and despite the fuzzy eyebrows).
- Use the chatbox. Enter in your questions. Enter in your comments. Dialogue back and forth. Type in a joke. I did that recently and someone entered back a laughing face — reaffirming that I was, indeed, funny.
- Designate a facilitator for the meeting: someone leading, coaching, and guiding. On my most recent call, a leader went around ensuring everyone was able to contribute fairly. She also ensured she asked for feedback on a specific topic and helped move the discussion around so no one person took up all the airtime.
- Unmute yourself. Please don't just sit there on mute for the entire meeting. Jump in and speak up. You will be interrupted. You will interrupt others. But don't get frustrated or discouraged — this is what work is now — just keep showing up and contributing.
- Smile, and smile big. Nod your head in agreement. Laugh. Give a thumbs up; give two! Wave. Make a heart with your hands. Signal to others on the call who are contributing that you support and value them. They will do the same in return when your turn comes to contribute.
It's too easy to keep your camera turned off. It's too easy to stay on mute. It's too easy to disappear. But now is not the time to disappear. Now is the time to stay engaged and networked within our organizations and communities.
So please don't put yourself on mute.
Well, actually, please do put yourself on mute so I don't have to hear your heavy breathing, candy bar crunching, or tinkling bathroom break.
But after that, please take yourself off mute so you can reclaim your seat (and your voice) at the table.