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After the "big" (17 person) NIH study came out describing our condition as one defined by "effort preference", I felt motivated to write a piece about how ME/CFS patients are not "lazy". I started writing about how I spend all my time either sleeping, forced to rest, or anytime my mind is clear I am working on something; I am never just laying here for no reason. I wrote about how distressed and depressed I feel when my mind is not clear enough to work on my projects. I wrote about how I do not like to sleep, I like to work on creative projects or advocacy projects. I wrote a long list of all the things I have accomplished since getting a bit better from Abilify in 2020.

And as I read it, I started to realize that I was contradicting something I believe in deeply, something I wrote and which is currently one of my highlighted Instagram stories. "We are not defined by what we make, do or produce. - Whitney Dafoe".

And I realized how fucked up it is that I felt such a need to prove that I was not lazy.

Laziness is not the opposite of being sick! How have we come to this place where if we show any lack of productivity we are terrified of being labelled "lazy" and therefore not legitimately sick? You can be lazy and still have a legitimate physical illness! You can be depressed and still have a legitimate physical illness! Any kind of person can have a legitimate physical illness! And most importantly, you can be unproductive in the Western capitalist sense of generating products like a machine and still have a legitimate physical illness!

Buddhist monks spend a lot of time sitting still producing no material goods, yet they are more active than most people will ever be in their entire lives. Activity and productiveness are not measured externally.

The world has spent so much time judging us and pointing fingers and pigeon holing us into a corner that I caught myself following their lead, going against a core belief of mine and writing about not being lazy to counter the NIH’s prejudiced study deciding that we have "effort preference" rather than the obvious truth that we exhibit natural "harm avoidance".

We do not need to prove anything to anyone. Fuck the NIH. Fuck anyone who tries to tell us we are lazy. They can eat shit. I do not need to produce material goods in order to be seen as a human being!

We are not defined by what we make, do or produce. We are whole, human beings regardless. And we have a physical illness called ME/CFS or Long Covid or ___________ regardless of what we make, do or produce. They literally have nothing to do with one another.

As all prejudiced, marginalized groups must do, we must take back our identity from the clutches of their prejudice. The black rights movement took back the "N" word as part of taking back their identity. The gay rights movement took back the word "Queer" as part of taking back their identity. These are just words, but they happened as part of a greater, deeper movement to reconnect with who they were as people beyond the stereotypes and prejudices they had been labelled with for so long.

And likewise, the ME/CFS and Long Covid community must do the same with the prejudice of "laziness". I don’t know if we are ready yet to take back that word, but we must when the time is right. And we must start doing the deeper work to lay the foundation for this comeback by creating our own identities as ME/CFS and Long Covid patients. Even when we are cured, we will still have ME/CFS or Long Covid in our souls, these tears will never wash away they are soaked into the fibers of our existence. But we can rise, wearing them proudly, in the colors of our own making.

Right now we often define ourselves in terms of opposition to the way society judges us. Like me writing that we are not lazy. We are not X, we are not Y. And we unfortunately need to continue doing this because right now their prejudice holds more traction with the public than our voices. Many doctors hear their words, not ours and treat us the way society judges us rather than with what our bodies need. But it is important, over time, to not only counter their prejudice but change the entire narrative.

In a debate, it is more effective to re-frame the argument in your terms than it is to simply refute their argument. Refuting their argument (saying "we are not lazy") often just adds fuel to the fire of their argument because we’re repeating the word and the frame they have put us in.

So how do we start to re-frame the prejudice against us?

We start now by rejecting any need to define ourselves in their terms. WE create the terms for our own enlightenment. Only us. No one else gets to define us for ourselves. Rather than talk about what we are not, we talk about what and who we ARE. We tell our stories and we tell them proudly. We never show any shame.

We still need to reject their prejudicial terms for now because we don’t have the awareness or the ears of the public to even tell them what and who we actually are. So it’s still important to tell the public why "lazy" is not a correct way of describing ME/CFS or Long Covid patients.

But we should also start re-framing the narrative and talking about what makes us human as individual people. Not ME/CFS, not Long Covid, not chronic illness, not our value as producers or consumers; Our bold, radiant humanity that no one can ever take away; The humanity that is unique in every one of us and which no one sees when they stamp us with terms like "lazy" or "effort preference" or "psychosomatic" or "not trying hard enough" etc.

Tell the world what you love and why. It is time for the world to see us and respect us for who we are as people.

Love,
Whitney