Making Chronic Fatigue Syndrome Visible is a Major Goal of Mine

sad woman sitting on couch

One morning, I came across a Substack newsletter, The Rest Room, that brought me great joy; it was concerning a conversation about “Can technology teach me to pace?” It turns out that pacing is a regular topic of this newsletter, so I’m mighty glad that I’m now subscribed. Pacing, as luck would have it, is the thing I am most terrible at, which is particularly bad for someone with chronic health issues. Anyway, in this installment of the Rest Room, the good news is Natasha Lipman had a conversation with the founder of a wearable company called Visible,

While currently in beta as of this post’s initial writing in September 21st, 2022, Visible’s goal is to be an activity tracking platform, but not for fitness. It’s specifically meant for those with energy-limiting chronic illness to track over-exertion, literally the opposite of FitBit. (I’m not even going to go into someone purposely buying me a FitBit the Christmas soon after I was beginning my chemotherapy treatments…) It turns out that the top two illnesses that people signing up for the beta experience are Long COVID (yeah, that’s a real thing) and Chronic Fatigue Syndrome.

I personally have suffered from Chronic Fatigue Syndrome, also known as ME/CFS, since 2015 when I finished my nearly six months of chemotherapy. Consistently doctors refused to acknowledge my symptoms as anything besides laziness, and one doctor even threatened to file a report with CPS concerning my “inability to function as a caretaker” of my two children at the time. This is why I so vehemently distrust doctors. Thankfully, the CDC now recognizes CFS as a legitimate health issue, but even they admit there is no cure, and treatment is simply managing exertion and stress; this is, of course, impossible for anyone who is forced to work full-time, which is why I nearly dropped dead in early 2020.

On top of my chronic fatigue, I also enjoy diminished lung capacity, a direct result of the cancer and also a side effect of one of the chemotherapy drugs. I also enjoy nerve damage, from the other chemotherapy drug, which isn’t entirely debilitating, but some days, it hurts like hell. You may wonder why I use the verb ‘enjoy’ but it’s either say that or ‘lament,’ so which are you going to choose when unfortunately we are given just one stupid body to inhabit in our few dozen trips around the sun?

Anyway, what Visible is aiming to do is collect data to help doctors and researchers better understand how chronic illnesses affect energy levels and exertion limits. As someone who is absolutely dreadful at knowing how to pace myself, this is going to be absurdly helpful, if not more than a tad bit depressing in just how limited I really am. At the moment, my limits are only obvious to me when I get dizzy, in pain, or lash out in anger at flubs that I make in exhaustion or lack of concentration. There are days in which I’m perfectly cogent, and yet, can’t move a muscle without feeling like my body is going to fall apart within moment. Then there are days where physically I’m able, but my brain is living in the dense fogs of Mount Everest. There’s rarely anything in between.

It’s absolutely astonishing that I’m able to write two to four new pieces a day at this point; that’s only because I instituted a new work-flow which forces me to go all out for an hour and stagger the rest over the course of the day. But, even in the initial stages of writing this very article, I’m now dizzy and just screamed at my computer for opening random things because my fingers slipped from fatigue. (Oh yeah, and I’m also on the autistic spectrum, so if something unexpected happens and interferes with my process I lose my crap.)

I’m looking forward to learning more about Visible, and hopefully I can participate in their beta. I’m quite eager to help researchers better understand one of the most understood chronic illnesses in the entire world. (Lucky me, I missed out on Long COVID, but I completely relate.) Also, I need to have physical parameters for when I must take a break or risk having a complete mental, emotional, and physical breakdown, of which I’ve suffered many over the past six years.

So, to all my invisible illness buddies reading this, I’m with you, and I highly suggest you check out Visible at MakeVisible.com.

Writing words, spreading love, Amelia Desertsong primarily writes creative nonfiction articles, as well as dabbling in baseball, Pokemon, Magic the Gathering, and whatever else tickles her fancy.
Back To Top
%d bloggers like this: