On Autoimmune Disease and Writing

The summer always gets away from me. I mean to blog and post on social media, but my life feels too full to stop and do these things.

There are family vacations and summer camps, the comforting and somehow oppressive rhythm of hot, humid days stretched long and fat here in my forested valley.

Between parenting, freelancing and the constant rudder shifting in the current of my life, I don’t often have the life force to spend on writing for a public eye. See, I’ve alluded to this in past posts, but I haven’t made it a major topic yet, so here goes: I have an autoimmune disease. Or maybe I should take out the article and just say I have autoimmune disease. Because the more I learn about this nebulous condition, I realize it’s not a cut-and-dry, easily categorized kind of situation. And there are often multiple kinds of antibodies present in the blood that point to various types of autoimmunity, all at once. What does it mean? My body was overwhelmed with something, somethings more likely, and stopped recognizing friend from foe. Now my immune system attacks me. I am my own worst enemy, on a physiological level.

Is there a cure? Maybe. The average woman spends at least 10 years trying to get a diagnosis, because mainstream medicine dismisses her as “that” kind of patient. The symptoms are vague and varied, including persistent exhaustion, increasing food intolerances and IBS, depression, extreme anxiety, estrogen and progesterone imbalance leading to perimenopause hot flashes, mood swings and insomnia, loss of brain function (otherwise known whimsically as brain fog) and an overall “hangover” feeling. There are other things, too, like weight gain, loss of the outer third of the eyebrows, hair loss. So many mainstream medical practitioners don’t want to spend the time to do the extensive testing necessary to figure out what’s really wrong, and further–what the root cause might be. Autoimmune disease doesn’t happen spontaneously. There is an unholy trinity: a genetic disposition, a persistent infection (viral, bacterial or fungal), and a time of extreme stress to push it all into a merrily burning dumpster fire.

The good news is that while you can’t change your genetics, you can track down your persistent infections (mold in your home, past persistent mono, Lyme disease are three very common versions) and take herbs to help. You can take vitamins and various medications. And you can do the hardest work of all: learn how to love your body again, after its monstrous betrayal. You have to learn to do this. Have to. Because it’s the key to getting better. But, hoo boy, it’s the hardest thing I’ve had to do.

The most heartbreaking part of all is that cheeky brain fog. Sounds kind of cute, doesn’t it? Oh, lookit Meg, she’s forgetting to get gas or buy groceries again. But it’s so much worse than that. It’s having a few lucid days, where my characters speak to me and the rich worlds of my imagination spin out with absolute joy. If you’ve ever experienced the state of flow, you know how it feels like you’re touching the true matter of existence itself. But then comes the day I sit down to write, and the story unravels. It dissolves like paper in the ocean. I can’t string the thoughts together, can’t make the words come. It’s not writers’ block. It’s senility. It’s terrifying.

I don’t look sick. Sometimes that’s the thing those close to me cling to, when they don’t know what else to say, “But you look good!”

There’s a parasite on my soul. Something vampiric is siphoning my energy, my happiness, my youth and leaving me an old woman in my thirties.

But I fight it, every goddamned day. Sometimes the battle looks like a nap, sometimes it looks like taking a sunlit walk. It’s telling myself I’m worth the fight, worthy of grace. That’s harder than I ever would have thought. Try it. Try telling yourself, in your darkest moments, that you are WORTHY. You’ll see what I mean. I’ve tried multiple doctors, herbalists, functional medical providers. I’ve learned to walk away when I’m ignored or dismissed. I’ve read and read and read and taught myself, because I have to.

If you’re reading this and thinking that you or someone you love might be experiencing something similar, here are three resources that quite possibly saved my life: the book Toxic, by Dr. Nathan, Dr. Aviva Romm‘s website, and Dr. Isabella Wentz‘s website. Good old Google is helpful, but be careful of falling down the doom-holes. My advice is to only read the stuff that gives you hope, not the stuff that makes you fear you’ll die decades early or have to have debilitating surgery.

So what does any of this have to do with writing? I suspect most people already know the answer: writing is life. And this is my life. It’s very difficult for me to bare my soul in this way; it’s the one thing about our internet-connected lives I’ve never liked: we give too many people access to our private selves, and are therefore diminished. But in these past years I’ve gone from someone who stood in solidarity for those women who felt ignored and harmed by the establishment to one of those women myself. So if only one reader gets a feeling of connectedness and hope from what I have to say, then right on.

One more thing: don’t feel sorry for me. I don’t need that. Cheer me on, in your mind, but don’t feel sorry. And know that I’m clawing my way out of this, and I’m really fucking proud of myself.

I’m still writing. I’m editing one novel (never a fun process, but still rewarding) and working on the first draft of another.

Haints is still well-received. It seems the Kindle version is pretty popular on Amazon, and I frequently have to replenish hard copies on my local Knoxville stores: Ijams Nature Center, Union Ave, Whimsy and a Dream, Bear Den Books, Tonya Rea’s Tea. If you’re looking for a great autumn read, Haints has all the cozy/creepy juxtaposition you could want 🙂

Until next time, Meg the writer is signing off.

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