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Check Out Meridith O’Connor’s Story

Today we’d like to introduce you to Meridith O’Connor.

Hi Meridith, can you start by introducing yourself? We’d love to learn more about how you got to where you are today?
Absolutely. My name is Meridith. I am 29 years old, born and raised here in St. Louis. My life took quite a turn in 2003 when I slowly lost my ability to chew, swallow, see, and speak. The muscles in my body grew tired only after a few minutes of use and I struggled to do some of the most basic things we all participate in on a daily basis. It was not until two years later that I received the validation I needed, as so many people either thought I was making these symptoms up or calling it something other than what it actually was. In 2005, I was diagnosed with a rare neuromuscular disorder called myasthenia gravis (MG).

My journey to diagnosis ultimately laid the groundwork for my patient advocacy career. From the very beginning, I was forced to advocate for myself, and over time, I developed the skills that become necessary when managing a chronic illness. Instead of participating in extracurricular activities or hanging out with friends like every other teenager, I was educating myself on neuromuscular disease and regularly engaging with healthcare professionals. I found myself in a space totally unfamiliar to me but with every interaction I had and every piece of knowledge I gained, I was empowered to take charge of a disease that had taken so much away from me.

While I continued expanding my skillset, I spent my college career studying psychology with an emphasis on healthcare ethics. Shortly after, I went on to earn my master’s degree in social work. During my program, I realized there was a large and complex gap in the healthcare industry that needed to be filled.

At some point in time, every person will likely take on the identity of a patient, yet, patients have very minimal say or influence as to how healthcare is delivered in the United States. Utilizing my personal experience as a patient for 15+ years as well as my education in the various sectors of social science, I knew I was on my way to building a career and bridging that gap. Thus, the Merit Option was born. Through the Merit Option, I educate, engage with, and empower both the chronically ill and the able-bodied community to value the patient experience.

We all face challenges, but looking back would you describe it as a relatively smooth road?
The most obvious obstacles I faced as a result of my diagnosis were the physical limitations. Today, I still cope with some of my symptoms, yet I have found that the physical aspects of this disease are only a portion of the challenges that I continue to face.

A chronic illness, particularly one that is not always visible to the eye, is a breeding ground for discrimination, judgment, and ridicule. People are quick to assume things about you or simply don’t care enough to take the time to truly understand how those who are chronically ill approach life. A prime example is when I was harassed for using my handicap placard. Another is the lack of accommodations in the workforce because I can’t work a conventional 9 to 5 job. It’s situations such as these that have fueled my fire and to work even harder because I know I am not the only one who has experienced these things. It has been a rocky road to get where I am today, but hey, I love ice cream.

Thanks for sharing that. So, maybe next you can tell us a bit more about your work?
My educational background is in psychology and social work with a concentration on health and medical ethics. My academic career, paired with my 15+ years of being a patient allows me to offer my expertise through my platform, the Merit Option. The communities I work with vary, but many of them involve patients, nonprofits, healthcare organizations, healthcare personnel, and pharmaceutical companies. My clients are usually looking to gain insight into the patient experience and much of that I deliver through writing, speaking, and consulting. Sometimes companies want articles from real patients, so I often guest blog for them and write content based on the specific topic they are looking for from a patient perspective. Other times, I speak on behalf of my disease community, serving as a keynote speaker to motivate my clients and remind them of the reason they exist: they exist for the patient. The majority of my work, however, has been consulting projects. I work with R&D biotech, pharma, and other healthcare companies all around the world, creating conversation and constructive dialogue on the value of the patient voice.

I wear many hats, but I find that I really thrive when I am writing from the heart or consulting with people who genuinely want to better the healthcare industry. I am really proud of giving this disease a purpose, or at least a purpose other than what it intends to do. The patient advocacy industry is a growing industry, but I would say that I am different from other professionals in that I think it is vital to work with people across the table. Everyone is coming from a different background with different values and a different perspective, and that needs to be not just valued but respected when trying to make positive change in the healthcare industry. I have been on both sides of the aisle so to speak and whether a patient or a healthcare professional, each role is crucial to healthcare delivery.

We’re always looking for the lessons that can be learned in any situation, including tragic ones like the Covid-19 crisis. Are there any lessons you’ve learned that you can share?
Truth be told, the pandemic revealed an ugly side of humankind in my opinion but it was also transformative in a lot of ways. On a positive note, remote work was once viewed as lazy or impractical. When COVID-19 invaded our lives it became our workforce and economy’s lifeline, and people started to see the value in working from home. As someone who cannot be at a physical office all day every day, I am grateful to see how this will open doors for people who aren’t currently in the workforce and desire to be. Moreover, I hope this propels a shift in our culture and forces companies to change the conventional and outdated constructs of the workforce.

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Image Credits
Image: Meridith being interviewed for KMOV segment, St. Louis Proud. (Image screenshotted from KMOV segment)

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