Today is #MillionsMissing, a worldwide day of protest and awareness for the millions of people missing from their lives due to ME. We raise our voices on behalf of our own community, and also on behalf of our compatriots with Long COVID.
For six years, the ME community has joined together for #MillionsMissing to speak with a united voice–demanding health equity through research, treatment, and support. More than one million Americans have ME. #MEAction estimates that 75% of us are unable to work, and 25% of us are homebound or bedridden.
To this tally, we now add Long COVID. The US Government Accounting Office estimates that 23 million Americans have Long COVID, and one million of them are unable to work.
We are in the midst of a mass disabling event.
Yet this is not the end of the accounting. We cannot ignore that one million Americans have now died of COVID, leaving at least nine million people to grieve. More than 200,000 children have lost a caregiver to COVID.
When I write these numbers out like this, it feels clinical and unreal. Abstract numbers on a spreadsheet. But if I think about what ME has done to my life and to my family, and then try to multiply it by one million, and then add another million or more–when I think about suffering on that scale, I feel despair.
In COVID, I see ME writ large–both the suffering and the turning away. Everything the ME community has endured is now the Long COVID experience. The disinterest, callousness, and denial that we have received from institutions and people in power has gone full scale. Our public health system failed to heed our warnings about Long COVID. Our country has decided we no longer need to protect one another from COVID, and the suffering is compounded and then compounded again.
Will there be a reckoning? Can we ever come to grips with what we have done to each other–to our healthcare workers, our children, our marginalized communities? Even if we can somehow count the cost, could we ever pay that bill?
It is so easy to witness the suffering and our failures, and stop there. Grief is heavy, and it is tempting to sit still with its weight. Yet people with ME have always fought. We raised the alarm about post-infection illness from the first days of the pandemic, and we have extended our knowledge and support to the Long COVID community.
We are–all of us–connected.
The ME community has sought justice and health equity for decades. We have achieved so much, but we are still far from our goals. A drippy faucet gets little attention, but a flood requires a full response. One million people with ME has not been enough, but when we raise our voices with millions of long haulers, maybe now we will be.
Ten Years of Unreal Time
Ten years ago today, I tapped the internet microphone and published the very first post on this blog, then known as Occupy CFS. My intention was to step into the light, to bring attention to the disease by writing openly about my own experiences, as well as the politics of our movement. Hundreds of posts later, I can say that I have done my utmost to achieve that goal.
There is something odd about the passage of so much time, though. Since the pandemic began, people have joked that time has no real meaning any more, but I have felt that way for more than a decade. I have few exterior milestones to mark time–no job changes or growing children. Where I live, late fall through early spring looks exactly the same when viewed through a window. Sometimes, I can’t remember what month it is.
Ten years feels like an interminable and unchanging tunnel of days, each one like the one before and the one after. Living housebound with chronic illness is a grind, and it has worn me down, much the way that centuries of footsteps wear down the stone steps of a cathedral. Yet so much has happened in the last ten years that it also feels like the time has passed in a few blinks. I’m always a tiny bit surprised when I remember my age–how did that happen?
If I had made predictions ten years ago, I would have said that I would still be sick today and that ME would still be grossly under-recognized and underfunded. Those outcomes were easy to anticipate and have proven true. Other predictions would have been wildly off base. Ten years ago, I had no intention of writing a memoir. I never could have guessed that my husband would become disabled, too, nor the ways that grief and loss would change my life.
I have always been a self-starting, goal-oriented person. I don’t wait to see what happens; I chase desired outcomes. This blog and my advocacy are a manifestation of my drive and determination, and I have pursued both at great personal cost. What’s odd about where I am now is that I don’t have much of a plan. I’m working as much as possible on my book, but I don’t know if it will ever see the light of day or how I can make that happen. I can’t begin to guess what might happen in my life or in ME advocacy over the next ten years.
Pierre Teilhard de Chardin wrote a beautiful poem called Patient Trust that captures this feeling I have of being in between:
ME advocacy has been irrevocably changed by the pandemic and Long COVID. Perhaps we are closer to treatments, or at least greater research investment. It is too early to say. And perhaps I will finish my book. Perhaps you will read it. It is too early to say. Progress takes time.
I didn’t start this blog with an end goal or timeline in mind. I just wanted to speak loud enough to be heard so that I could make a contribution to our fight, and I hope I have succeeded. As much as we have accomplished in the last ten years, there is more work to do. I’m here for it, for as long as it takes–even if I’m not quite sure what that will look like.