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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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5min read
Health

Patriarchy Stress Disorder is A Real Thing and this Psychologist Is Helping Women Overcome It

For decades, women have been unknowingly suffering from PSD and intergenerational trauma, but now Dr. Valerie Rein wants women to reclaim their power through mind, body and healing tools.


As women, no matter how many accomplishments we have or how successful we look on the outside, we all occasionally hear that nagging internal voice telling us to do more. We criticize ourselves more than anyone else and then throw ourselves into the never-ending cycle of self-care, all in effort to save ourselves from crashing into this invisible internal wall. According to psychologist, entrepreneur and author, Dr. Valerie Rein, these feelings are not your fault and there is nothing wrong with you— but chances are you definitely suffering from Patriarchy Stress Disorder.


Patriarchy Stress Disorder (PSD) is defined as the collective inherited trauma of oppression that forms an invisible inner barrier to women's happiness and fulfillment. The term was coined by Rein who discovered a missing link between trauma and the effects that patriarchal power structures have had on certain groups of people all throughout history up until the present day. Her life experience, in addition to research, have led Rein to develop a deeper understanding of the ways in which men and women are experiencing symptoms of trauma and stress that have been genetically passed down from previously oppressed generations.

What makes the discovery of this disorder significant is that it provides women with an answer to the stresses and trauma we feel but cannot explain or overcome. After being admitted to the ER with stroke-like symptoms one afternoon, when Rein noticed the left side of her body and face going numb, she was baffled to learn from her doctors that the results of her tests revealed that her stroke-like symptoms were caused by stress. Rein was then left to figure out what exactly she did for her clients in order for them to be able to step into the fullness of themselves that she was unable to do for herself. "What started seeping through the tears was the realization that I checked all the boxes that society told me I needed to feel happy and fulfilled, but I didn't feel happy or fulfilled and I didn't feel unhappy either. I didn't feel much of anything at all, not even stress," she stated.

Photo Courtesy of Dr. Valerie Rein

This raised the question for Rein as to what sort of hidden traumas women are suppressing without having any awareness of its presence. In her evaluation of her healing methodology, Rein realized that she was using mind, body and trauma healing tools with her clients because, while they had never experienced a traumatic event, they were showing the tell-tale symptoms of trauma which are described as a disconnect from parts of ourselves, body and emotions. In addition to her personal evaluation, research at the time had revealed that traumatic experiences are, in fact, passed down genetically throughout generations. This was Rein's lightbulb moment. The answer to a very real problem that she, and all women, have been experiencing is intergenerational trauma as a result of oppression formed under the patriarchy.

Although Rein's discovery would undoubtably change the way women experience and understand stress, it was crucial that she first broaden the definition of trauma not with the intention of catering to PSD, but to better identify the ways in which trauma presents itself in the current generation. When studying psychology from the books and diagnostic manuals written exclusively by white men, trauma was narrowly defined as a life-threatening experience. By that definition, not many people fit the bill despite showing trauma-like symptoms such as disconnections from parts of their body, emotions and self-expression. However, as the field of psychology has expanded, more voices have been joining the conversations and expanding the definition of trauma based on their lived experience. "I have broadened the definition to say that any experience that makes us feel unsafe psychically or emotionally can be traumatic," stated Rein. By redefining trauma, people across the gender spectrum are able to find validation in their experiences and begin their journey to healing these traumas not just for ourselves, but for future generations.

While PSD is not experienced by one particular gender, as women who have been one of the most historically disadvantaged and oppressed groups, we have inherited survival instructions that express themselves differently for different women. For some women, this means their nervous systems freeze when faced with something that has been historically dangerous for women such as stepping into their power, speaking out, being visible or making a lot of money. Then there are women who go into fight or flight mode. Although they are able to stand in the spotlight, they pay a high price for it when their nervous system begins to work in a constant state of hyper vigilance in order to keep them safe. These women often find themselves having trouble with anxiety, intimacy, sleeping or relaxing without a glass of wine or a pill. Because of this, adrenaline fatigue has become an epidemic among high achieving women that is resulting in heightened levels of stress and anxiety.

"For the first time, it makes sense that we are not broken or making this up, and we have gained this understanding by looking through the lens of a shared trauma. All of these things have been either forbidden or impossible for women. A woman's power has always been a punishable offense throughout history," stated Rein.

Although the idea of having a disorder may be scary to some and even potentially contribute to a victim mentality, Rein wants people to be empowered by PSD and to see it as a diagnosis meant to validate your experience by giving it a name, making it real and giving you a means to heal yourself. "There are still experiences in our lives that are triggering PSD and the more layers we heal, the more power we claim, the more resilience we have and more ability we have in staying plugged into our power and happiness. These triggers affect us less and less the more we heal," emphasized Rein. While the task of breaking intergenerational transmission of trauma seems intimidating, the author has flipped the negative approach to the healing journey from a game of survival to the game of how good can it get.

In her new book, Patriarchy Stress Disorder: The Invisible Barrier to Women's Happiness and Fulfillment, Rein details an easy system for healing that includes the necessary tools she has sourced over 20 years on her healing exploration with the pioneers of mind, body and trauma resolution. Her 5-step system serves to help "Jailbreakers" escape the inner prison of PSD and other hidden trauma through the process of Waking Up in Prison, Meeting the Prison Guards, Turning the Prison Guards into Body Guards, Digging the Tunnel to Freedom and Savoring Freedom. Readers can also find free tools on Rein's website to help aid in their healing journey and exploration.

"I think of the book coming out as the birth of a movement. Healing is not women against men– it's women, men and people across the gender spectrum, coming together in a shared understanding that we all have trauma and we can all heal."

https://www.drvalerie.com/