What’s Wrong with You? – Part One

This is Part One in a series of honest blogs about my journey into autoimmune disease and my fight against it.

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I haven’t done a whole lot of blogging since the end of 2016. It’s not that life has been dull; quite the opposite, actually. I’ve just been too tired to blog.

Tired. Now there’s a loaded word in our culture. We use it a lot, especially when we exchange pleasantries when we bump into each other or on Facebook.

“How are you?”

“Fine. Just tired.”

“Worn out, today.”

“Man, I’m tired.”

We’re all tired. It’s sort of the American mantra. We pride ourselves on our exhaustion because it illustrates how damn hard we work, and if there’s one thing Americans love, it’s hard work to the point of exhaustion. I don’t know why. I’m guilty of it, too. I love opening my planner and seeing the entire week covered in ink, scribbles in every corner. Sometimes I’ll actually make checklists of things I’ve already done just so I can have the satisfaction of checking them off.  Write possum story? Check! Clean up dog vomit? Check! Got the mail? Check–I got the hell out of that mail, today.

Accomplishments make me feel valuable. But I don’t feel valuable these days.

Until now, I’ve only put snippets of this part of my life on the blog. A mention of autoimmune here, a quick joke about OCD there. I brush it off so you will brush it off, so you won’t think there’s something wrong with me on the inside. Because it’s embarrassing to be sick. Because it’s shameful to be resting. Because when you see me at Kroger, I look just fine, and how can anything serious be wrong if I look fine? (“Fine” is, of course, a relative term–sometimes I go without makeup and you go home and tell your family you had a Kraken encounter.) And because when I tell people I don’t feel so well, they inevitably ask me, “Well, don’t you take supplements?”

“Do you take probiotics? You should really be taking one a day.”

“Don’t you go to the gym? It helps your immune system.”

“You really should do yoga. Lift weights? Walk more?”

“What’s your diet like? I always feel sick when I eat crap.”

And even though I actually have been doing all of these things, eventually, the questions begin to morph into statements that contain just a hint of judgment:

“Boy, you sure get sick a lot.”

“They must have a room reserved for you at Med Express. Hah!”

“You know, too many antibiotics aren’t good for you.”

“When I get a cold I just power through it.”

“At least you don’t have cancer.” And this one is particularly awful because I tell myself the same thing whenever I feel like crap: Hey idiot, you don’t have cancer. You’re not dying–you’re just tired.

How do you respond to those statements when you know that, on the inside, something is genuinely wrong? I knew I was getting sick a lot. I knew I was too tired. And no matter how I fought back, nothing changed. What happens when you do everything right and still feel sick?  What do you do when you literally cannot summon the energy to change a light bulb, as I could not last weekend?

After a while, you start to get paranoid. After a while, you wonder if they think that you enjoy being sick, secretly. (Illness is no picnic around here: Shawn maintains a strict schedule of soup, tea, hot baths, and Vicks rubdowns for the unwell, and no, you may not decline.)

For years I’d had general body aches and mild to moderate fatigue. Enough that I felt like a real slacker compared to Shawn, a man born with more than enough energy to power him through life and parenthood. Several years ago, I started having neck and shoulder pain. Huge trigger points formed in my neck–I wrote about it here. My wonderful massage therapist worked them out, but they came right back. My chiropractor moved my spine. The pain refused to abate. Eventually, my GP gave me a fibromyalgia diagnosis, a pain disorder characterized by sensitive nerves and fatigue.

Additionally, I had the weakest immune system imaginable. I caught every cold my kids brought home, and it invariably turned into bronchitis. One year I had to take six courses of antibiotics.

Six.

The problems began to compound in graduate school when I found myself under intense stress. True to the American spirit, I couldn’t simply get through academia; I had to beat it into submission. I worked harder and longer and more intensely than I’ve ever done, for anything. I mean, I don’t even work that hard at being a mom (as evidenced by Benjamin’s report card, which says he gets so wound up in class that he destroys his projects before he finishes them.) And while I did well in my MFA program, halfway through I was diagnosed with Sjogren’s Syndrome, an autoimmune disease characterized by dry eyes, dry mouth, digestive problems, fatigue (yes, more!), and widespread pain.

Autoimmune issues are believed to be born of stressful events. In the last ten years of my life, I gave birth to two children, lost several dear friendships, was diagnosed with obsessive-compulsive disorder, and got a master’s degree. It was in the cards, I guess. The doctors told me that once an autoimmune disorder is diagnosed, it never goes away, and they tend to multiply as time goes on. Hashimoto’s, Scleroderma, Lupus, Rheumatoid Arthritis, Sjogrens, Multiple Sclerosis. You can only manage the symptoms. They said it will get worse, over time, and it’s not unheard of for a patient to die.

Well, they didn’t tell me that part, but research filled in the blanks. Dammit, WebMD. I just can’t quit you.

I think it’s time for people like me to
stop being quiet about what’s going on. Fear of being labeled a complaining wimp, fear of being pitied, fear of being judged have all kept me from really talking to people about what has been happening inside my body. No, I don’t want to run into you at CVS and answer, “Crappy,” when you ask how I am. I want to say, “Fine.” (Actually, I want to say, “I’ve just won a Pulitzer,” and smugly buy my Sensodyne.) But when I say I’m fine over and over and over, am I really adding anything good to my world? When I deny that there is something wrong with me, something that I believe affects far more people than we realize, am I missing an important opportunity to speak up and speak out? Am I treating myself like the wimp I’m afraid you’ll think that I am?

My silence buys me a pass to continue to feel sick rather than seeking a scientific answer. The more I say, aloud, “I am sick, I am in pain, I am not well,” the more real it becomes. When it’s real, I can no longer ignore it. When I can no longer ignore it, I have to act. Because this autoimmune problem, this deflated life, will kill me if I don’t. Besides, if I’m going to call myself a writer, don’t I need to use these words to add something to the world? You know, something other than stories about Ben and his hatchet collection.

But it’s hard to ask other people to give a hoot about me. We have a lot to focus on in this country, right now. I’m one tiny person who is, at least, still managing to get through her day. Why am I deserving of the time it takes to read a blog about a sore neck? This is why people keep quiet about their personal struggles, of any kind.

I wrote this blog a week ago but have not yet found the courage to click the publish button. I don’t know when I’ll publish it because I’m not quite sure I’m ready to talk about this. I’m not sure my words matter in the grand scheme of things and I’m not quite sure you won’t roll your eyes when you read this.

I went to a naturopathic doctor recently–not a hippie dippie crystal dealer, but an M.D. and a D.O. who have treated patients like me in their clinic, who have science on their side and a plan for me in mind. It’s another attempt at healing, and I am both hopeful that it will work and protectively skeptical that it will not.

I’ve been reading Sonya Huber’s Pain Woman Takes Your Keys and Other Essays from a Nervous System. She writes far more beautifully about chronic pain and autoimmune disease than I ever could, but she has also inspired me to do the same. I want to write about my journey, a chronicle of sickness and the quest for health. And then I get afraid and close the laptop for another day because I don’t want my headstone to read HERE LIES LAURA: she was sick and tired and forced everybody to read about it.

If you promise to be understanding, I promise to be honest. And funny.

Yesterday’s Blog

Already I’ve fallen off the wagon on my 30-day blog-a-thon. I’m going to try to double up today, but it’ll be difficult. We’ve got a road trip planned. Perhaps I can allow room for one day away from the blog each week. During grad school I always gave myself a day off.

That’s not true, actually. When I realized, suddenly in November, that I only had six months left to write the thesis, I panicked. It sounds utterly ridiculous, doesn’t it? Six months and you panicked? You freak of nature. I know. And I am a freak of nature. But recall, if you’ll permit me some slack, that I have OCD (without the C) and an anxiety disorder, and those voices are far louder than those of reason.

But at the same time, I don’t think I can possibly be the only thesis-writer to have sat up on Thankgiving night and said, “Holy shit, I have to turn this thing in six months from now! I’ll never get it done.” When I started the thesis in early August on my own, before the semester had started, I felt like I had plenty of time. The better part of a year. And it was only required to be 125 pages, and I had one solid essay written and chunks of others that would eventually morph into thesis components. But once I started assembling these bits, and writing more bits, word by agonizing word, I realized why it takes people years to write a book.

Writing is hard. It’s tedious. And there are many, many days when the words just aren’t coming. Now, in “real” life, when you’re writing a book on your own terms, you can say, “Eh, today’s not my day,” and piddle around or just abandon the effort altogether. It doesn’t make for writerly discipline, of course. It’s frowned upon by uber-hard workers and the super prolific. And I can make the argument that even if you’re writing garbage, at least you’re writing, and that from the pile of crap you produce you may just dig up a diamond. (By that I mean a single decent sentence out of 4 shitty pages, or a salient idea worth pursuing.) In school, however, there’s a deadline. You’ve got to write. If you write crap today, you damn well better not write crap tomorrow, because there are only so many tomorrows in a semester. The point is to get it done, and to do so largely on your own. Nobody pushes you in grad school; they just expect results on the appointed date.

One of the most valuable things I learned about myself in the last two years is that I function really well with a deadline. I’d never have thought that about myself, but it turns out that when I have no expectations placed upon me, I just fart around and dally in the daffodils and dream half-assed writer dreams that never come to fruition. This is possibly the most important thing I could have learned about myself with regards to a future career. I will never get anything done unless someone is expecting work by a certain date. Doesn’t matter who. I just need a date by which a piece of writing must be ready, and then I’ll be efficient and studious and hard-working. I need a second entity in my writing life, someone who’s waiting for me to write. I alone am not enough to push myself to success.

That seems kind of wimpy, kind of weak. Perhaps, but it’s what I know to be true. It’s how and who I am. And I’m so glad I learned it.

When I realized I only had six months, I panicked. And I think plenty of thesis students have done this. Writing a book-length work in under a year is impossible, really. No thesis is book-ready. I could edit and rewrite mine for another year, and I fully expect to, for more than a year. And sadly, the manuscript will no longer be the laser focus of my existence. (Damn kids, always needing food.) It’ll be a side project, one that gets my attention when I have time, when the stars align properly. That’s a huge bummer, and a huge relief. The thesis and I need some time away from each other. I’m happy to devote myself to the pieces individually, but as a whole, it’s starting to feel like a houseguest that won’t leave and has been feeding my dogs table scraps and teaching my kids obscene gestures.

With that said, I’ll cut this blog shorter than I’d like to (I can do that because nobody is reading it or checking it or expecting it) and go rouse my menfolk. We have moutains to find today!