My Patient Story
State: South Carolina
Congressional District: SC01
Immune Disease, Neurological Disease
Issues and Challenges
Sarah Page has encountered: Access to Expert Providers, Insurance Issues, Surprise Billing, Transparency in Health Care
I was diagnosed with Relapse Remitting MS a decade ago at the age of 22. When I was younger, it was difficult and frightening to learn more about my condition. While I knew connecting with others in similar positions would be helpful, I was intimidated to do so. Burying my head in the sand felt easier, which was possible (to an extent) because I went into remission not long after the relapse that triggered my diagnosis.
About a year after my diagnosis, I moved from the US to Buenos Aires, Argentina. I needed a fresh start, and most importantly fresh people that didn’t look at me with pity and sadness because I was the 'friend diagnosed with MS'. I wanted to meet people who saw me as a girl who already had MS and seemed normal.
Moving abroad was step-one for me in my journey towards self-acceptance. I distanced myself from some unhealthy lifestyle habits and started treating my body with more respect. Over time I learned how to talk about my condition without breaking down emotionally. But for the most part, as I remained in remission until three years ago, my MS was not physically visible. I was more heat-and-humidity-sensitive than the average person, but beyond that, the illness manifested mostly as a psychological and financial burden. Even though I spent around eight months out of the year in Buenos Aires and considered it my home, I have always felt more comfortable keeping my healthcare in the US. I wanted to manage my health in my native tongue, and I have more faith in our standard of care when it comes to cutting edge technologies. I valued spending time in the US with friends and family anyways so traveling back and forth didn’t feel like a burden.
The downside to healthcare in the US, of course, is the cost. I switched medications various times over the years and lost coverage at my out-of-state 'specialty brain and spine center' due to shifts in healthcare policy, all of which spurred struggles to keep my healthcare paid for. I've fallen victim to copay accumulators, resulting in a nasty surprise bill and delayed treatment. At one point in my healthcare journey it was actually a better value to fly to the bottom of South America for MRI's then it was to have them done in the US, despite being insured in the US. The battles I have fought with health insurance companies are disheartening and draining, and where I first learned how to advocate for myself and my health.
In the beginning of 2019, I relapsed for the first time since my diagnosis. New and unpleasant symptoms appeared, and my body was wrecked with fatigue for months. When crisis strikes, I take comfort in action. I made a major shift in the management of my MS, switching to a heavier duty, immunosuppressive treatment which required closer tracking of my immune system health. I added another neurologist and a few more specialists to my team, and was thankful that I already had an established relationship with a psychologist to help manage stress. The relapse was the physical manifestation of my MS I had been fearing but hadn’t had to face yet. It almost felt like the diagnosis all over again, except this time I wasn’t blind sided, just forced to face reality. The difference was that this time I was a mature adult, not an intimidated child. It was time to pull my head out of the sand, and I was ready.
I joined my parents’ MS support group, made a friend in Buenos Aires based only on the fact that we both had MS, and started reading and educating myself more. I followed MS-centric accounts on Instagram. I started attending seminars and, when the pandemic hit, webinars. And as my personal connection to the MS community grew, so did a desire to get more involved. That’s when I started googling “patient advocacy” and came across the Patient's Rising organization. After completing their patient advocacy course, I feel better equipped and inspired to fight for my rights as well as my fellow patients'.
My Motivation and Inspiration
I am extremely inspired by both of my parents, who took up MS advocacy years ago. I now join them on calls to legislators on behalf of the National MS Society, so I can share stories from my healthcare journey to personalize pleas for support with MS research funding and patient-focused legislation.