When I was diagnosed in 2017, my amazing wife and daughter created these sticky note reminders of support and love. They’ve been up ever since. I still need them because 1) I forget that I’m not alone in this, and 2) I can be pretty hard on myself.

Turns out many of us have some pretty mean voices in our heads berating us for a wide variety of bullshit. In some cases — I have learned in therapy — these voices are conjured as a means of self-protection that eventually outgrow their usefulness. They’re also not super great at calming us down when we’re scared. Instead, they hunker real close and whisper things like, “Yeah, whatever you’re already worried about AND your hair looks like Kramer’s,” or, on even worse days, “Don’t forget — MS could also make you go blind and need to wear a diaper.”

I didn’t always have this Karen policing my thoughts and reminding me that everyone I love could die at any time. In fact, When I was little, I had a caretaker who made me feel pretty safe: my dad. For context, he was chronically ill with ulcerative colitis even before I was born, and then it progressed to colon cancer, so that served as a not-really-discussed backdrop to our (my sister’s and my) childhood. However, even while ill, my dad was a source of fun and comfort.

One night, as my sister and I lie in our beds in the attic, I definitely heard a witch scratching at the window. Clear as day. Scraggly witch nails, encrusted with the blood of children, dragging against the window near our heads. I could not let this stand. So I crept downstairs to enlist help. I can’t remember how or what I asked, or if I led with “hey there’s this witch,” but my dad came upstairs with me and listened. When I said I could still hear it he moved my entire mattress across the room and got me cotton balls to put in my ears. And it wasn’t with that “Jesus H. I am going to do whatever it takes to get back in my damn bed” energy that I hypothetically know about for no reason. It was patiently, and with tenderness — at least in my memory (which is really all that matters now). Once he had tucked me in and confirmed that I felt safe, he went back to bed, never once dismissing my fears. After that, I have a memory of him cutting the branches off the maple tree which completely coincidentally were outside our bedroom window.

This is one of those cornerstone memories of my dad, who lived until he was just 38. It helps define him for me. And, just like that mean voice, I carried it with me into parenthood so that when our daughter would get scared, have growing pains, or have worries bubble up at bedtime, I could summon the tenderness and compassion my dad had for me. Okay, not even nearly 100% of the time (please see hypothetical scenario above): I can only hope there’s at least ONE time when I really had my shit together and mustered legit patience and love that will serve as such a memory for her one day.

But here’s the thing: I’m both the little girl and the parent. I’m still afraid of the witch outside my window, and I’m capable of compassion. For those with a chronic illness — and probably many of us without one — feeling worthy of compassion can be truly difficult. Generating it for ourselves is even harder.

Sadly, I don’t have a cure for mean brain-Karens (though therapy helps). I also don’t think there are too many people who have airtight self-compassion — except maybe for mediocre white dudes who didn't grow up with trauma. However, here’s my goal:

When I am scared about what this disease might do to me, what further impact it might have on my family and livelihood, and whatever other witches my mind can conjure, I aim to drag my mattress, get that cotton, trim those branches, rub those growing pains, and tell Karen, “Thanks, but pipe down, please. Your work is done. Shove over and make room.” Again and again and again. I am worthy of compassion, and so are you. Let’s live like that’s true.