How This Silent Disease Gave Me My Voice How This Silent Disease Gave Me My Voice 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. Alex Moresco 24-year old entertainment publicist from Chicago, Lyme disease advocate and star of "PRGirl," Alex Moresco's clients include the likes of Chris Jones, comedian and hypnotist from 'America's Got talent'.