Living With Fibromyalgia: How I Learned to Love a Body That Always Fights Me Back

“Doctors always wrote off my symptoms as a slew of nothings — growing pains, a finicky stomach, puberty — as my body became an increasingly tiresome place to live in.” (Photo: Getty Images)

All my life, my body has adopted symptoms without my consent. At 5 years old, it was stomachaches. At 6 years old, it was chronic allergies. At 8, it was acne and contact dermatitis. At 10, it was deep, penetrating pain in my lower legs. At 12 years old, it was migraines. At 16, I started getting UTI-like symptoms; there was never an infection.

Doctors always wrote off my symptoms as a slew of nothings — growing pains, a finicky stomach, puberty — as my body became an increasingly tiresome place to live in. Finally, at age 19 in 2011, when I had a full-body flare of head-to-toe pain that sent me to the hospital five times in one summer, I was diagnosed with fibromyalgia. Fibro is a chronic pain condition in which the body overamplifies sensations and misreads messages as pain signals. There is no cure.

Related: What I Wish People Knew About My Illness, Even When I Look Fine

As I began a treatment regimen, and my symptoms receded to manageable levels again, I promised myself that I wouldn’t question my diagnosis. I wouldn’t let myself wonder why my body was improperly wired. I’d just carry on. But in the summer of 2012, my symptoms flared again. This time, my digestive system was rejecting virtually all food, leading to daily, head-spinning stomachaches that made the rest of my body ache and a vibrant social life impossible — and I couldn’t just carry on as I’d promised.

I resented my broken body in all the ways it didn’t work and entered into a dark, angry phase of manic “health.” I didn’t recognize it then, but I viewed my body as separate from myself. I was trying to train it like a drill sergeant, forcing it to adopt a working routine, rigidly dieting, “clean eating,” intent on finding the personal haven of health that had always eluded me. Somewhere in the middle of it all, I lost 40 pounds, along with my sanity.

I was holding a bottle of water infused with cucumber, mint, and lemon, getting ready to go work out on my treadmill, when I saw myself in a mirror. Realization dawned on me. It was impossible to deny how fragile I had made myself during this period of unintentional self-punishment — and I hadn’t noticed a thing.

Related: 5 Things Someone With Chronic Pain Wishes You’d Know

We’d all like to disconnect from our bodies sometimes. Take a vacation from self-care, not worry about wellness. I am an extreme example, as someone with chronic pain, but women all know the hurt of a body that’s letting us down — from the moment we get our periods and realize that bodies can completely and entirely suck. These worn, tired, beaten-down figures are not all we want them to be. They hurt. They’re not thin enough for society to consider beautiful, they’re not healthy enough for culture to revere.

Pop culture and the media has “ingrained in every fiber of our being” that we must conform to a standard of health, beauty, and wellness that is rarely achievable, says counselor and psychologist Karla Ivankovich, PhD, an adjunct professor of psychology at the University of Illinois, Springfield. “As a result,” she tells Yahoo Beauty, “women begin to loathe these bodies that are not the standard set by society.”

Ivankovich says this standard is known as “privilege.” Only an elite few are entitled to the best bodies. Back in 2012, I sensed I was not one of them. My body had always fought me back, and I wanted a breakup. Sort of like being forced to occupy a studio apartment with your ex, you just develop a contentious relationship, and hostility reigns.

When you don’t love your body, the place in which you are forced to live, you may begin to feel disconnected from it. You don’t want to adopt the broken pieces as your own, so you draw boundary lines, says Ivankovich. “You attempt to control the things you can, because disordered bodies can be so out of your control,” she explains. “This is a way to establish balance; by disconnecting yourself from your attacker, your body, you are attempting to establish a homeostasis in any way you can.”

The frustration of living with a disappointing body can build up. Or we can decide that our bodies deserve better than the standard we hold them to: perfection. Ivankovich says we all have to accept the things we cannot change about our bodies and find ways to align with them. “When more energy is placed into fighting what is wrong with you, you miss the opportunity for finding what is right with you,” she says. “Closed minds do not allow for progress, even if it is personal.”

In the middle of my own frustration back in 2012, I started to let go of what my body should be and wasn’t. I decided to look instead for the little ways it was serving me. I found one — one that trumped all the brokenness. I started to simply acknowledge the fact that, after so much anguish, a genetic blip beyond its control leading to years of chronic pain, my body was still standing. Isn’t it incredible that, most mornings, our bodies do?

In the years since I was first diagnosed, doctors have slapped me with at least a half dozen more labels to encompass my personal constellation of medical issues — interstitial cystitis, IBS, PMDD, costochondritis, TMJ. In these first few weeks of spring, my symptoms have intensified. I am “flaring,” as we fibro kids say. Today I woke up with shiner-like dark circles under my eyes from the full-body ache and fatigue that just haven’t sorted out yet. I’m having more bouts of chest pain and more skin problems than I have had in some time. This isn’t even my “normal,” let alone society’s normal.

Once a competitive athlete, I can’t sprint anymore and I can’t run distances. I cannot travel too far from home without physical repercussions in the days after a trip. I may never be the girl who has wild adventures camping, road-tripping, or backpacking through Europe — all these activities our generation considers badges of honor.

So, instead, I’ve created my own. My brain is sharper than ever. My career is flourishing. My patience for this body is unending. And I’ll celebrate those milestones, instead of ones I’ve missed. I won’t get upset at my worsening symptoms. I won’t seek control of my uncontrollables. I won’t punish my body for not working “correctly” and try to beat it into shape. My body doesn’t need my haphazard instructions. It’s smarter and more in tune than I am. It knows its own needs and communicates them through symptoms that ask for rest and TLC; I just have to honor them. My body will get better in time. It’s working silently and relentlessly to do so right now.

I am working from bed today. Not because the pain has defeated me, but because my body needs it. All bodies need that reprieve sometimes — even the strongest. And this body is the strongest vessel I know. I’m just lucky to count its victories as my own.

May 12 is Fibromyalgia Awareness Day. For more information on this chronic pain condition affecting more than 10 million Americans, click here.

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