The fatigue began at the top of my head and rolled down my body, as if I’d been standing under a cold shower. I felt flushed, chilled, achy, and unsteady on my feet. I had to lean against the display case of the cupcake shop, hoping my son wouldn’t notice. We were on vacation in Walt Disney World, and somewhere along the way (the Monorail? The stretching room in the Haunted Mansion?) I had caught a bug. I brought the cupcake and a life-changing virus home with me. To this day I don’t know what that virus was.
I was dizzy most of the time, even lying down. Taking a shower exhausted me for the rest of the day. My sleep patterns became erratic, averaging five hours of tossing and turning per night. I would wake up from a nap feeling just as bad if not worse than before. I was housebound for days and sometimes completely bedbound. A pattern of relapses and remissions continued for two and a half years. I missed a total of fourteen weeks of work and had to quit my job. I relapsed for the last time in 2021 and I haven’t been back to full health ever since.
What on earth was wrong with me? It had to be something more than some random “non-specific virus,” as more than one doctor told me. They couldn’t find anything wrong. “Rest and hydrate,” they each said. I did, for weeks on end, but never felt better. I was scared that I was subconsciously making it up. I asked my PCP about ME/CFS. A friend said that my symptoms reminded her of a film she had seen called “Unrest”. Could this be what had been plaguing me for so long? As is the case with so many other people, it took months of screenings, scans, and blood tests from a dozen doctors to eliminate all other fatigue-related illnesses. It wasn’t lupus, rheumatoid arthritis, or Meniere’s disease. It wasn’t Lyme or even long COVID. Finally, via a diagnosis of elimination, my healthcare provider agreed that I had post-viral ME/CFS, triggered by that first virus in Florida three years prior.
Before getting sick, I had a job I loved. I worked on a project that had changed the face of higher education and access to knowledge. I am a librarian by training, and I managed copyright policy for online education at MIT. It was intellectually rigorous, but with my new brain fog I couldn’t remember what I’d done that day. I would attend meetings, give presentations, and travel to international conferences, but now I couldn’t walk to the bathroom alone. My last active day of employment was March 5, 2021.
There’s nothing a librarian likes more than researching a topic, so I took to the internet to see what I could find. A search for support groups for ME/CFS returned the Outreach page of the Bateman Horne Center. I signed up and attended my first support group meeting that week and it turned my whole outlook upside down. I saw people from around the world sharing their experiences with this awful illness I’d only just heard of. Some folks were sitting up in chairs at their kitchen tables or desks. Most were propped up by couch pillows or lying in bed. Some wore sunglasses. Others were in dark rooms. Many had their cameras off; some due to an aversion to screens, others for privacy. I saw reflected back at me the many presentations of ME/CFS. Whether they had been sick for decades or less than a year, the facilitators Meredith Mehner and Tahlia Ruschioni welcomed everyone with validation and loving kindness. There was a piece of everyone’s story that felt familiar to me. I managed to get a question answered during that first meeting and it convinced me that I was in the right place. That morning, I was the only person I knew who had ever even heard of ME/CFS. By the same evening, I knew one hundred people. I felt safe, affirmed, and — most importantly — believed.
Support groups aren’t the only way patients can find help. The Bateman Horne Center offers resources that have provided real-time benefits for me. The “Good Day/Bad Day Questionnaire” is an important tool I share with my primary care doctor at my quarterly follow-ups. I needed surgery for an injury last summer and I gave the surgeon the “ER and Urgent Care Considerations for ME/CFS” handout in preparation for the procedure. She had heard of my illness and was glad to have the additional information to inform my treatment.
Sitting in our virtual circle, attendees of the BHC support groups share our stories and witness each other’s lived experiences. Even if we don’t speak, each person’s condition is met with compassion and warmth. I recognize how privileged I am to belong to this community. I am lucky to have a doctor who will read anything I send him about ME/CFS. I have the support of a loving family and friends who don’t say unhelpful things like, “Oh, I’m tired too.” There is no “feeling better” for us, there are only days that are better or worse than others. There is no treatment or cure. There are millions of others suffering who remain unseen, unheard, and invisible to the world. They are gaslighted by their family, friends, employers, and doctors. Everyone at the Bateman Horne Center works tirelessly to extend the privilege of treatment and community as broadly and deeply as possible. Medical personnel receive continuing education in complex post-viral syndromes, including long COVID. Patients are treated for their symptoms. Afflicted people are welcomed into a group of fellow chronic illness warriors – a group to which none of us want to belong.
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