The Fear of Autoimmune
*I wrote this post a full year ago and can’t believe the journey I’ve been on at healing my fear of my autoimmune disorder, at releasing stress that’s been pent up for years and at uncovering a me that’s not defined by my disorder. I’ve decided to share this incredibly personal and raw stream of consciousness that I didn’t have the strength to share a year ago in case it resonates with anyone else. For those people who it does, know it takes time but it can and will get better. Thank you for letting me be vulnerable here and for supporting me always.
When you're a baby, you develop boundaries through touch. You bump your head on the table then avoid the corner because it hurt.
When you're a toddler, you learn there are elements of this world that are a little frightening. If you look around and can't see your mom, you cry. A sinister looking character costume may cause you to scream.
When you're school aged you learn there are feelings to fear too. Loneliness, being made fun of, not feeling smart.
In high school, you discover you're not invincible. You might fear driving for the first time, or getting your heart broken, or if you'll get into your dream college.
You get where this goes. Your fear base grows as you do so you can navigate the world with tact and cautious movements.
When you have autoimmune, this normal fear growth is put into overdrive. A seismic shift occurs and astronomical growth is supercharged till it spills from your body in hiccuping waves. Your fear base opens into a thrashing, dark ocean.
It's a shadow that sits heavily on your shoulders. That covers your eyes, and spins you around in pitch black, and throws its' voice, cackling and you can't find it to quiet the noise.
It's a cage that locks you into your deepest inquietudes and allows them like mercenaries to wreak havoc on your body with no escape.
It's an exciting discovery that disappears from your shaking hands when you try to touch it to see if it's real and you look up and your surroundings have shape-shifted so you can't get your bearings.
If this sounds dark, it's because it is. And those with autoimmune are heroes for finding light and breath and joy when the fear surrounding them is so difficult to break through.
When you have autoimmune, your body is like a double agent. It can help you to get better or turn against you in an instant and you never saw it coming. It switches allegiances at the drop of a hat and gives body confidence an entirely new meaning.
Yes, we have major trust issues.
When you have autoimmune, you fear happiness and stability. How long will it last? What is lurking behind the next corner? How can you calm your mind from going through the never ending cycle of rituals and regimens that keep you in balance?
Yes, we're commitment-phobes.
We've been left by friends, given up on by doctors, and medication and supplements have gone rogue on us too.
Autoimmune is a dictator.
It educates through fear based tactics. Want to stay out late? It'll punish you with a torrent of symptoms. Eat whatever you want? It'll make you pay up mafia-style now or double what you owe later. It doesn't discriminate and it is ruthless.
Yes, we're scared.
But our experiences shape us to have fear as our default emotion. We're scared when we're in a flare it'll get way worse and it will be difficult to recover (it often is). We're terrified we'll lose relationships if we reveal who we truly are but wind up feeling lonely in inauthentic ones anyway. We're fearful of happiness because it feels diaphanous. Our bodies betray us firing cortisol in absurdly high amounts and ridding our guts of serotonin, literally creating a happiness disappearing act.
You, with autoimmune are a warrior and your fight against fright is worthwhile every day. Rest against fear is also worthwhile and might trick it into receding.
I, with autoimmune, write this to bring the fear out of the shadows. To stand with you when it's dark and the sounds are frightening so you don't feel quite so alone.
Because here's the thing I continue to remind myself when fear sits heavy on my chest: fear hates the light. So turn towards it. Let gratitude wash over you for your life exactly as it is. Remember that your own sinewy magic is all you need. And that you are not alone, the fear fighters from all legions: Dysautonomia, Celiac, Lupus, MS, IBS, Arthritis, and many more stand with you, ready to battle together.