To the ME/CFS & FM Community

by | May 13, 2021 | Awareness Day, Fibromyalgia, Long COVID, ME/CFS, Orthostatic Intolerance, Patient Voice

Lisa

My name is Lisa O’Brien, and I am a COVID Long Hauler and the founder of the Utah COVID-19 Long Haulers group, a group I started almost a year ago when no one would take me seriously after being sick for several months. I knew there would be others in my community who would end up like me and I was determined to find them all.

I had gotten sick in March of 2020 just as the country began shutting down and the only thing, we thought we knew about COVID at that time was that it began with a cough, fever, and shortness of breath and if you were young and generally healthy, you’d survive a 14 day bought of it, should you end up with it. Week 6 of my recovery was when I started to find all the others, who had also surpassed the 14-day recovery mark. We had no clue what was happening to us or why we were still sick.

It wasn’t until talk of things like dysautonomia, POTS, ME/CFS, fibromyalgia, and mast cell activation syndrome started circulating the groups that the pieces started fitting together and it all began making sense. Most of us, myself included, had never even heard of some of these post viral illnesses that are talked about so frequently in our support groups today.

It took 11 months before I finally received a proper diagnosis of POTS, orthostatic intolerance, mast cell activation syndrome and was told that I meet all the criteria for ME/CFS. While 11 months felt like forever to me, I know how lucky I am to have gotten these diagnoses in under a year. I had gone to doctor after doctor, and by month 9 I think I had racked up at least 80 different doctor appointments. The Drs. couldn’t explain why my body was behaving the way it was, they had no clue why my heartrate was hitting 160 every time I would stand up and some blamed my symptoms on anxiety or my mental health. I’m sure this response sounds familiar to many of you.

Sadly, there are many more COVID Long Haulers joining these ranks with me every day as these same diagnoses are becoming more and more prevalent in our support groups. The number of us ending up with these syndromes at the exact same time is so significant, that they can’t ignore it and like you, we’ve been fighting to be heard.

But, I want you to know, that when we advocate and fight for the COVID Long Haulers, we are also fighting for the Long Haulers that came way before COVID even existed. We know we are not the first. It is our hope that the research being done today on Long COVID will also bring answers and treatments to help those that have battled these illnesses for years, some even decades. If only one good thing comes from COVID, I pray it is this.

To end, I really wanted to express my gratitude today to the ME & Chronic illness communities for all of your guidance and direction in this journey. Thank you for your patience and for teaching us things like pacing, how to navigate healthcare and disability, and for just letting us know that we are not alone. We would be seriously lost without your support, so I thank you.

Lisa shared this message at the ME/CFS and FM Awareness Day event on May 12, 2021. 

#MillionsMissing #MillionsMore #Hope4MECFS #Hope4Fibromyalgia #Hope4LongCOVID

By Lisa O'Brien

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