May 12, a Day to Raise Awareness for a New/Old Plague
In the early years, I wanted to swap my disease for one that left obvious marks. Something visible so that when I went into a doctor’s office or explained my illness to family or friends, their mind would gravitate toward illness. And not, as they looked at me — young, well-dressed, rosy-cheeked, articulate — toward wellness and doubt.
May 12th is International Myalgic Encephalomyelitis (ME) day. A day that receives too little attention each year in part because sufferers, like me, don’t look overtly sick. The disease isn’t obvious from a glance and, due to decades of neglect, the dysfunctions we endure are not easy to test for either. This has made it hard to raise awareness of the disease and hard, as a patient, to get care. As a result, it’s not a disease you’re likely to know, unless you or a loved one suffers from it.
And that’s tragic, because the disease is more common than you might expect — affecting more than one million Americans — and can leave you as sick, every day as AIDS patients are in the last weeks of their lives. What’s more, because ME tends to develop following an infectious illness, it has become vastly more common during the pandemic. As many as 10–30% of those who catch COVID-19 experience lasting symptoms that have collectively become known as Long Covid. A huge percentage of those have gone on to develop ME and to discover, as I did, that there is no support for people with this disease.
So, what is ME? ME typically develops following an infection. For some, onset is gradual, a loss of function and accumulation of symptoms. For others, like me, it’s sudden. One day you’re well, the next, you’re not. All the symptoms that will define your life into the future inexplicably, jarringly there.
I woke that first day feeling like I had been hit by a bus.
The most common symptoms of the disease are extreme fatigue, brain fog, unrefreshing sleep, dizziness, headache, flu-like symptoms, and sensitivity to light, sound, and touch. But what sets the disease apart is its cardinal symptom: post-exertional malaise (PEM). PEM means a severe worsening of symptoms following physical or mental exertion that can last for days and even weeks. Patients often refer to this as a “crash” and, in its abruptness and severity, it is every bit as violent.
PEM usually comes at a delay. For me, the impacts of PEM are felt most strongly 24–48 hours after activity. So, while I feel worse and worse the longer I am active, the full bill comes due days later. Symptoms mount from the first day after activity to the second, in a hellish crescendo.
The exertion can be minimal. Preparing a meal in periods I am more unwell or running errands when I have more function. Even an activity as seemingly trivial as writing this editorial is so exhausting I need days of rest to recover. Days in which I am even more tethered to bed and self-care slips. More severely ill patients may not even be able to brush their own teeth without provoking PEM, while more mildly ill patients may be able to hold down a job, provided they spend the rest of their waking hours recovering from that exertion.
I sit somewhere in the middle of that spectrum. Not able to work, not quite able to have what you might call a life. But able to do many of the things I must do — grocery pickups, doctor’s visits, laundry, vacuuming — somewhere near as often as they need to be done and able to do many of the things that bring me joy, often enough to keep me moving forward.
There are no approved treatments, and for twelve years I’ve managed to live with that.
The more common name for the disease is chronic fatigue syndrome (CFS). Sufferers tend to dislike that name, because neither it nor the definitions attached to it describe the illness or its impacts. The name and the definitions (now widely discredited) imply the disease is simply persistent fatigue. But the difference between what patients live with and that description is, as fellow sufferer and author Laura Hillenbrand once put it, the difference between a nuclear bomb and a match.
So, today is May 12th and here’s what I would like you to know. You may get this disease, if you are similarly unlucky. And if you do, you may come to feel it has ruined your life. You will likely have to leave your job. You may lose your spouse, family, and friends. You may lose the things that help you get from today to tomorrow, that make you feel like you. You may go to your doctor looking for answers and find only coldness and ridicule. You may apply for disability and discover along the way how little our country cares for the disabled.
You may wish to die. Suicide is one of the leading causes of death, because there are no treatments and the disease is unrelenting.
You probably won’t get this disease, though. Yet, there may be someone in your orbit who does. You may ask and they may explain and I hope that perhaps after reading this you may try to listen.
If after reading this you’d like to learn more about ME/CFS, Solve ME/CFS and ME Action are two fantastic organizations advocating for the disease. Patients are sharing their stories on Twitter with the hashtags MEAwarenessDay and MillionsMissing.
