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How This Silent Disease Helped Me Find My Voice

Health

Every morning, I wake up and take upwards of 20 pills. And no, I am not 90 years old. From the outside, I look like an ordinary, exhausted, 24 year old striving to find balance and contentment in all aspects of my life: I work part-time for my namesake PR firm, frequent classes at DePaul University for my Master's program and attend the occasional industry party. Where I differ is under the skin: I have chronic Lyme disease.


Two years ago my world was turned upside down by an undiagnosed illness. I had flu like symptoms, intense joint pain and began to lose my memory and hearing. While I was once a thriving, productive member of society, I found myself essentially bedridden with no answers. Because I had multiple symptoms of many other chronic illnesses, such as Thyroid Cancer, MS, Lupus, Leukemia, Fibromyalgia, Non-Hodgkin's Lymphoma, and Chronic Fatigue Syndrome, I went through two solid years of medical testing and retesting, with negative results each time. I was eventually told by one of the specialists that my illness was "all in my head." It took me two years and eight specialists to find a doctor that would go on to test me for Lyme disease. With a long track record of seeking answers, I finally got one. When I was diagnosed, I had no idea that this illness would go on to positively impact my life.

According to Global Lyme Alliance, "Lyme disease is a complex infection that can affect various systems in the body including the joints, nervous system, heart, and skin. Lyme and other tick-borne illnesses often go undiagnosed and untreated, leading to deep-seated infections and long-term impairments. Many symptoms of Lyme are similar to other illnesses, which complicates diagnosis."

Chronic Lyme disease is a hot topic in the medical field: traditional MD's insist it does not exist or that it cannot live in the body past 30 days but upwards of 300,000 U.S. residents tell another story. According to Global Lyme Alliance, 55 percent of Lyme disease diagnostic testing is inaccurate and more than 20 percent of those diagnosed with Lyme go on to experience severe symptoms past 30 days. Most battling Lyme do not have medical treatment covered by insurance and spend thousands of dollars every week to get the care necessary to stay alive, including myself. When I talk about my battle with Lyme, as horrible as it may be, I always say that I am one of the lucky ones because I am able to afford treatment. Most cannot and suffer the long-term consequences of untreated Lyme disease that can tragically end in death.

Alex Moresco (R) at Lyme Disease Fundraiser

After having to take a massive step back from work to receive treatment, I refocused my efforts on helping the hundreds of thousands of people suffering from my “invisible" illness. Through a mixture of research and reality TV (former Real Housewives of Beverly Hills star Yolanda Hadid is closely involved in the organization), I discovered the Global Lyme Alliance and quickly realized that I could leverage my professional expertise in PR, marketing and social media to fuel my personal passion of raising awareness and funds for Lyme disease. In that moment, I felt a bit of normalcy return to my life as if my old and new world had married in the most authentic way possible. I felt more hopeful and confident in my personal and professional purpose than ever before.

“People who are passionate and connected to any cause, especially those that are disease related, can truly make a difference in people's lives. With Lyme disease, it's patients like Alex, who have personally committed to take on this challenging and often chronic disease through raising awareness of, and funding for, improved understanding, diagnosis and treatment. She is a shining star for all those suffering from Lyme disease and admired greatly by all of us here at the Global Lyme Alliance."

– Scott Santarella, CEO of Global Lyme Alliance.

Alex Moresco (R)

While my battle with chronic illness took away my drive to be a public relations tycoon, it afforded me a renewed spirit in helping others. As a result of my day-to-day fights with Lyme and weathering the storm, I have been blessed with mental clarity. A chronic illness like Lyme disease is an emotional roller-coaster to say the least. To boot, it is a humbling transformation that makes you realize just how insignificant your “first world" problems.

Freelance writer Kerry J. Heckman had a similar epiphany after being diagnosed with Chronic Lyme disease and autoimmune illness.

"When I was diagnosed with Lyme and autoimmune illness I realized how small the things I used to worry about were and refused to waste another minute of my life not following my passion. I consider my diagnosis my wake up call--a roadblock that was telling me I was headed in the wrong direction and needed to turn around. I'd always loved to write, but being diagnosed with Lyme gave me a story to tell and a way to connect with other people through my words. It is often the greatest hardships that help you find your voice."

While Heckman uses her journalism skills to advocate for Lyme disease awareness, I turned to what I knew: public relations. I tasked myself with getting an underrepresented subject into the media. How does one do that? They throw an unforgettable party. Knowing the Global Lyme Alliance was based on the East Coast and potentially had the opportunity to expand West, I knew this was a golden opportunity to make a huge impact. After relentlessly emailing the Global Lyme Alliance for three months, an email from their team finally made its way to my inbox in May.

An important word to keep in mind when you are chronically ill is "persistence." I have always been a persistent person, originally stemming from wanting to prove cynics wrong that made a snap judgment on my skill set based off of my age without knowing me. However, fighting a chronic illness awakens a new kind of persistence. Not only are you battling a life or death situation, but you feel a dire urge to do something about it for others that potentially have it worse than you do. In my initial outreach to GLA, their response was skeptical at best- and for good reason. Here I was, an unknown recently diagnosed 24 year old asking them to let me throw a namesake event for their organization in a brand new market. While everyone involved eventually agreed that Chicago was the right move for growth, what they didn't understand was: I was never going to take no for an answer. After my life was turned upside down, I was searching for a purpose and due to my severe memory loss, I had to be honest with myself - it could no longer be work. Persistence in a personal passion makes you do crazy things and sometimes those crazy things actually work out.

I quickly connected with another GLA volunteer based out of Chicago, Kasey Passen, and spent the next four months on the phone asking for donations: you name it, we asked for it. Building on persistence, living with a chronic illness takes your ability to be resourceful through the roof. You have to work ten times harder than the person sitting next to you to accomplish the task at hand but personally, that just deepens my drive to not only get it done, but get it done right. Through the planning process, I fused my PR skills into everything I did. If I didn't have a contact somewhere, I found a way. If someone didn't reply, I followed up. Long story short: never be afraid to cold email someone and ask to have a quick call. Nine times out of 10, they will give you 10 minutes of their time if you have a clear ask.

"Invest in taking a personalized approach when reaching out and making the ask. Avoid beating around the bush - clearly outline your objectives and communicate how your organization and the targeted brand align and benefit one another. Additionally, make it easy for them to want to help you by conveying the impact your organization or event has made along with other creative ways they can cross-promote your cause. PR reps need to know the who, what, when, where and why so they can relay the value and authenticity of the opportunity, outside of just doing good, to their client in hopes they will jump on board," says Lindsey Palmer, founder of PR and brand strategy agency Palmer Public Inc.

“They say there's no “i" in team, and in truth there's no “i" in PR either. In this industry, it's nearly impossible to exist in a vacuum. Working creatively and collaboratively always leads to bigger successes, and surrounding yourself with a group of people all working toward the same goal makes the long days and extra work so much more meaningful." - Natalie Mazzarella, Publicist and Content Creator.

In the end, by strategically leveraging my professional expertise and documenting my Lyme story and relationship with GLA on the first-ever “PRGirl" web series, The SubLyme Soiree was a huge success. We doubled our fundraising goal and brought in over $60,000. The energy at the sold out event space was absolutely electric and I largely believe this was because of the team I surrounded myself with. Many of us in public relations are not only workaholics, but control freaks. We like things done a certain way, at a certain time and OUR way- which is not always the right way. In business, I always knew to surround myself with people that were not only better than me, but also carried a varying skill set that would add value to the task at hand. The same can be applied to fueling personal passions, whether it is launching a side project or working with a nonprofit.

While our first instinct when building a brand is traditionally to move as quickly as possible, according to publicist Natalie Mazzarella, we should be working in collaboration with others:

“They say there's no “i" in team, and in truth there's no “i" in PR either. In this industry, it's nearly impossible to exist in a vacuum. Working creatively and collaboratively always leads to bigger successes, and surrounding yourself with a group of people all working toward the same goal makes the long days and extra work so much more meaningful," Natalie Mazzarella, Publicist and Content Creator.

Alex Moresco

Fellow Lyme advocate and writer Hannah Wright put it best: "Lyme disease made me comfortable in my own skin, which is ironic because our bodies are literally attacking us." I would have to agree with Wright- going to bat for something you truly, deeply believe in takes the fear out of failure versus success: ultimately, you will step up to the plate and get it done.

Author Ally Hilfiger believes we all have the power to do something meaningful with our lives:

"After a very long battle with Lyme disease, I chose to use my platform and business skills to help raise awareness and funding for an important and unacknowledged disease instead of wallowing in self-pity. Standing up to make a difference in the lives of our children and future generations, who are most at risk at getting this disease, has given me inspiration and motivation to push forward and stay healthy and strong. We all have the power to do something meaningful with our lives, and I am grateful to have the experience in business to be able to help." – Ally Hilfiger, Author, Advocate and GLA Board Member.

I may only be one voice out of thousands, but I am happy to share my narrative in hopes of spreading light and awareness to this important invisible disease. When you are faced with adversity, you can do one of two things: roll over and let it become you, or stand up and do something about it. While a chronic illness or misfortune will become ingrained in who you are, in helping others we help ourselves heal.

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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/