From the age of 11, my body has never felt like home. It’s a usually just foreign, hostile place where I’m simply taking up room, not “living.”
What sort of home would be so disobedient, so unloving and coarse? Where I’m a stranger to its own language, behaviors and unspoken needs. Where I’m anxious over every twinge and ache that could signal a new, unknown disease.
I was in sixth grade when my body rebelled against me. I began menstruating that year and experiencing crippling, blinding pain with it.
From that year forward, my periods came with an encompassing state of dread and panic, from the very first sign of blood. This blood wouldn’t stop for weeks and would return after days, without warning. I lived in constant fear of something I could never predict or control — something that would disrupt my life for days on end and leave me a withered shell of myself.
That unpredictability was the least of my worries. My periods forced me to lie on a couch in a cold sweat, my white-knuckled grip on the armrest and my body twisting and contorting in agony. No painkiller or home remedy could fix me. It was common for me to blackout in public or throw up whatever I managed to eat. I’d always remain in this state until sleep finally washed over me.
In my early 20s, my symptoms changed. I started to hurt outside of my periods. I was tired all the time, and I could barely eat anything. My weight plummeted, turning my already thin body almost skeletal. I constantly felt miserable, and nothing could fix it.
For 13 years, I begged for an answer. A solution. A label.
And finally, after a surgery at age 24, I got one. “Endometriosis.”
There’s something so freeing about a name for what you’re experiencing. The validation that came with a medical diagnosis immediately restored some semblance of trust in myself. I wasn’t crazy. I had a chronic illness.
I’d struggled for years with doctors telling me I’m “fine”, and with sympathetic, but skeptical friends and family members not knowing what to say to me. When everyone around you seems to think you’re exaggerating, you start to wonder if this pain is “all in your head.”
Maybe I just wanted attention. Maybe I couldn’t handle “a little bit of discomfort.”
When my disease found its label, I made sure to tell everyone I knew. Not because I wanted them to know I wasn’t making this up or because I wanted their pity. But because I wanted other women to know about it, in case they felt like I did.
So I started a blog. I joined support groups. I rallied for better medical care for women, who for generations have been made to feel that their life-altering symptoms are “normal” or second-rate to others’ more important concerns.
But after a few months of this, I realized another label came with my chronic illness. “Sick.”
It’s a little strange to balk at that. “Yes, I have endometriosis, but please don’t say I’m sick.”
It’s like if I said, “Yes, I’m married, but please don’t say I have a husband.”
If someone said that, you’d wonder why. Are they crazy? Are they lying? Are they ashamed?
The truth was that yes, I was a little bit ashamed. I am a little bit ashamed. I’m ashamed that I don’t have a “normal” body.
Because when you’re labeled “abnormal” or “sick,” you get a slew of other labels that go with it:
The last one has always been the hardest and scariest for me. In my mind, I know I work hard. I always have. I never leave work undone at the end of the day. I’m always the last person to leave. I’ve never, ever been called “unmotivated” or “indifferent.”
But even with all that, I still spend so much time convincing myself and the world around me that my sickness does not make me lazy.
I work from home to manage my chronic pain, fatigue and other issues on a long list of symptoms. Being able to sit in comfortable clothes, sleep just a little longer and work in my home office makes a world of a difference for my body. It makes it possible for me to attend work events or travel when I’m asked to. And on a day-to-day basis, it manages my energy so that I can clean my house, go to the grocery store and enjoy my life after the work day is done.
But when I tell people I work from home, I always hear the same thing: “That must be nice.”
As if to say, “It’s so great that you don’t have to do anything, but you still get paid.”
No matter how much I try to tell myself that these people don’t know, that their opinions are meaningless, that my company knows how incredibly disciplined and hardworking I am and that’s why I’m offered this flexibility, I still internalize these comments. Maybe I really am “lazy.”
This anxiety eventually got to me. I stopped taking days off. I worked overtime almost every day. I constantly checked my email on my phone and never fully turned off from work.
When you’re chronically ill, it’s easy to fall into a trap of proving to the world that you can do what other people can. Because when you spend so much time pushing yourself and demanding more than your body can supply, you end up even more tired, sore and worn.
This didn’t stop with my work life. For awhile, I used to drag myself to the gym five days a week, just to show that I could still have a strong body. That I could outpace the man on the treadmill next to me. That I, too, could lift those weights, run those 5Ks and do whatever Facebook and Instagram said my friends could do.
I was so terrified of being weak or unattractive. I clung to the slim figure I’ve had my entire life, begging for it to be the one part of my body that wouldn’t abandon me. When medication added pounds to the scale, I crumbled into a heap of clothes that didn’t fit anymore and bawled for an hour. Nothing, no matter what I did, could keep my body from turning against me.
After that, I realized I needed to be honest with myself. I wasn’t “normal.” But that didn’t mean I was “abnormal.”
It took me a while, but I began to reject the labels that others were sticking on me. And more importantly, I started to redefine what my own labels meant for me.
I could be “hardworking,” but I couldn’t break my neck anymore. I began to surrender more chores to my husband and started saying “no” to excess obligations. I worked from home without guilt. I barked back at criticism from acquaintances with “Yeah, well, that’s what happens when you have a chronic illness.” I silenced people with my work ethic before they even had a chance to speak.
“Social” got a new definition, too. My fear of missing out took a backseat to the reality that I couldn’t be everywhere, with everyone, every single time. I couldn’t let myself run on empty, just because I wanted to stay at a party for an extra hour. I couldn’t travel to another state for a board game night with my friends, if I’d just traveled the weekend before. My friends learned that I loved them, but I couldn’t always pick up the phone. And that it was okay.
I still struggle with coming to terms with a new “strong.” No, I won’t ever be able to run a half-marathon. The impact that running has on my knees and pelvis is just too much, and that probably won’t ever change. I likely won’t ever have six-pack abs or be able to deadlift ummm anything. I’m not going to be an Instagram model.
But I go to the gym whenever my body gives me permission. I’ve maintained a figure that I’m happy with and learned to stop beating myself up over missed workouts. I rejoice over my progress, even if it follows a few days of regression. I’m amazed at how much my body can still do, even though I thought it had totally walked out on me.
Labels can be empowering. I’ve connected with so many women who have been forced to wear “endometriosis.” I’ve found pride and confidence, despite my diagnosis. And I’ve started to understand that “sick” is my reality and not something to be ashamed of.
But labels can also wear you down and confine you to a box. And it’s hard when you’re up against others’ misconceptions and biases about those labels. I still hate when people hear my disease’s name and think they know all there is to know about chronic illness, when they don’t have the slightest idea.
But it’s not up to us to constantly disprove those lies. I’m not here to correct everyone who thinks they know who I am because I’m “sick.”
I’m here to live for me. And I’m here for my own labels.