This Is ME/CFS

♿️ 𝐀𝐜𝐜𝐞𝐬𝐬𝐢𝐛𝐥𝐢𝐭𝐲: 𝐋𝐢𝐬𝐭𝐞𝐧 𝐭𝐨 𝐭𝐡𝐢𝐬 𝐩𝐢𝐞𝐜𝐞 𝐫𝐞𝐚𝐝 𝐚𝐥𝐨𝐮𝐝:

My stress response has slowly been getting better over the past 5 years since taking Abilify in 2020. But last week a couple filmmakers visited my home to film my father, my mother, and I as part of a documentary about chronic illness. I of course didn’t just jump right in, I’m careful about who uses me to represent ME/CFS to the public - I am very careful not to contribute to us being misrepresented. But one email from them and I could tell they were true artists who also understood the reality of ME/CFS. And so I planned 2 days in a row to film as much as I could with them, trying to show what life with severe ME/CFS is like. I know from wretched experience that pushing your limits 2 days in a row is the worst thing you can do, but I also feel that a chance to show the world the truth about ME/CFS is the absolute best thing you can do. So I hoped for the best. Which is also what I did when I was filmed for the documentary Unrest, which put me into a crash that took me to the depths of hell for 7 horrifying years.

The two filmmakers turned out to not just be artists, but truly gifted artists. If you’ve been to art school you can see right through all the bullshit, and I could see by how they talked about the filmmaking process that they were deeply feeling and thoughtful people.

The film comes out in 2027 and I’m very excited about what they will put together. One of them has mild ME/CFS and the other has Muscular Dystrophy that has not yet become symptomatic. And both of them are clearly brilliant and are going to make a documentary that isn’t just informational but a journey full of emotion as well.

So this year, most of my energy for ME/CFS awareness month and day won’t be seen until 2027. But I sincerely hope I did you all justice. I did my very best to represent the illness in a true and honest and complete way that was not about myself but about all of you. I really connected with the filmmakers and we all cried during the filming (and none of us are "criers"). I cried not for me but for all of you. What is happening to us is, when you really face it, so profoundly heartbreaking. And I faced it so I could try to show it to the world.

I pushed myself pretty hard and spent 4 hours straight with them both days in a row, making 4 total hours of footage. And I felt ok while they were here, I didn’t get that feeling of inner weakness that tells you to stop or you’ll pay the price.

And I didn’t get PEM from working with them. But something else has happened as a result of the push that has scared the sh*t out of me.

My stress response went through the roof after they left. And just kept climbing. The same stress-crash response I had before Abilify that trapped me still in bed. I have had physical energy, but sometimes the stress grows until I cannot even touch my phone or look at any screen. Which means I am back to struggling to get my basic needs met.

This is ME/CFS. Five years of fighting, jedi mind tricking myself into calming my stress response, constantly working on training myself not to react to normal everyday objects with a danger response. My stress response fell low enough that the nerves around my stomach calmed down and I began eating again and lately don’t use my Jtube at all. But suddenly I am having moments straight out of 2018.

I found myself having to control my thoughts because thinking of the wrong thing would make me crash. There is a classic joke of telling someone to not think of a pink elephant, and laughing about how it is impossible not to. But if you have severe ME/CFS, you have to learn not to. Because there grows an entire world of objects and subjects and trains of thought that are simply too stimulating and going there with your mind will make you crash. You are of course completely aware they are there, like monsters lurking in the shadows. But you have to learn not to even think of them.

I found myself even just last night laying still unable to even touch my phone or computer and needing to send texts or communicate something but simply not being able to. And having to just let it go and lay here in stillness and silence. Alone, and unable to get help without hurting myself. This is such an awful feeling, there is no way to describe it unless you have experienced it. It is the most profound sense of fragility and helplessness.

Sometimes I have laid here feeling like my heart is screaming but no sound comes out of my chest. And I just lie here screaming in silence.

This is ME/CFS. Unrelenting. Unforgiving. Never ending. You fight and fight for crumbs of life that most muggles throw away. Crumbs that are not even good enough for the dogs. And then ME/CFS launches a new assault and you are back in the trench you were in years ago. No mercy. No solace. A forever war that keeps taking and taking and taking. We must always -always- find new depths of strength and will to keep crawling forward; Or sometimes just to dig our fingernails deep enough into the bare earth to not get blown off the cliff. Sometimes not getting worse is progress. Sometimes getting less worse is progress. Sometimes progress does not exist, there is only existing. Life itself stripped of every single thing we thought was concrete, sacred or steady. Every last shred of dignity. Just bones and flesh and a burning desert that was once our beautiful lives.

But here I am writing this in the middle of the storm. I have no idea what is happening to me or how or why or where it will go. But sometimes I can write just fine. So I’m trying to get this out onto paper while I can. Before another wave takes me spinning into more treacherous white water.

I don't know what is happening to my body. But that is ME/CFS. We never do. We just keep going and we grab hold of crumbs when we can to feed our souls. Sometimes they are so stale they crunch in our mouths like sand, but to us they are rays of light, glimpses into paradise, oases in the desert, glowing gems from a lost world. Little fragments that while not nearly enough, remind us of the everlasting beauty and we trudge on. Into the brink, into the unknown, straight into the suffering void. And we wait for more crumbs-

And the day that we too, are fed a true meal and feel the whole, glorious life we have always deserved.

Love, Whitney ❤️