Today, I turned 28, and next month I will mark 11 years of living with POTS (postural orthostatic tachycardia syndrome). Each year with POTS has brought different challenges, and I’ve grown to expect the unexpected. I’ve learned, as anyone with a chronic illness does, to endure and adapt. I prize these skills above all others because they enable me to live the fullest life possible while battling POTS. Despite my best efforts to soak up the good moments, and let the bad ones wash over me, I found 27 particularly trying.
Just before my 27th birthday, I was a passenger in a three-vehicle car accident. I sustained a concussion that triggered a POTS flare that sent my health spiraling to depths it had not been to in years. It stole from me the functionality I’d fought desperately to regain in the 10 years since developing POTS. I spent the first several months of 27 in acute recovery, and the rest of the year navigating exhausting ups and downs. In May, my doctor informed me that my autonomic system is the most reactive it has ever been since I was diagnosed in 2014, meaning my POTS is the worst it has ever been – even worse than when I was using a wheelchair. When people see me in public, or view posts on social media, I tend to appear functional. After being sick for more than a decade, I’ve gotten very good at presenting as “normal” while everything inside me is falling apart.
In the past, I have been vocal about my struggles with dysautonomia. I have used my story and my everyday experiences to convey to people the severity of this largely invisible illness that affects 1-3 million Americans. But this past year, I have found myself quiet as I reckoned with my evolving relationship with POTS and the fresh wounds it has created. 27 challenged my optimism and my strength. But I have hope that 28 will be different.
Why do I have hope? Because while I’ve been fighting my personal battle with POTS, the growing army of dysautonomia warriors has been fighting for me and for millions of others. This year has been the biggest yet for the movement, as we’ve made leaps forward in terms of visibility, awareness, and research. In December, Solange Knowles came out as having a form of dysautonomia. This spring, Tori Foles and her husband Nick Foles, Super Bowl MVP, joined the POTS movement – partnering with Dysautonomia International to push for increased fundraising and awareness. After Dysautonomia International organized the first Congressional Briefing on POTS, Congress, for the first time, directed the National Institutes of Health to “stimulate the field” of POTS research as part of the FY 2018 Omnibus Bill. And Dysautonomia International funded over $400,000 in POTS research studies this year, with many more studies in the pipeline.
This progress is humbling, but equally humbling is the enormity of the work in front of us. There are incredible doctors out there – like my own, Dr. Brent Goodman at the Mayo Clinic – who are educating their peers and conducting research to better the lives of those with dysautonomia. As of now, POTS remains a chronic illness with very few effective treatments and no cure. But it is within our power to find a cure – we simply need to continue funding research. Currently, more doctors are requesting funding for research than we have money to give.
That is why I’m asking all of you to help me mark my 28th birthday by signing up to walk in or donating to the 2018 Boston POTS Walk with Team Hanna G and Me, or by creating your own team or donating at POTSwalk.org. All funds raised go directly to Dysautonomia International’s POTS Research Fund.
Here’s to another year of fighting to beat POTS!
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