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.

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