Resilience, Endometriosis and Me
My eyes flutter open, and I wonder how long I’ve been asleep in my tomb-like, too-small bathtub. I rinse the Epsom salts from my body, climb out and immediately sit on the toilet seat with a towel wrapped tightly around my head and shoulders. Staring blankly at the tile floor, I watch tiny rivulets roll down my legs and bleed onto the bathmat.
And I wait, cherishing this fleeting moment of peace.
Ever so slowly, a heaviness returns to my pelvis as its ever-present pain returns. I squeeze my eyes shut as my muscles seize up, and I whimper beneath the hum of my husband’s TV show in the other room. Staggering to my feet like a newborn calf, I pull on over-sized clothing and limp away from my bathroom’s humid comfort.
And I’m reminded that I will never experience recovery.
After my first surgery — the one that diagnosed 13 years of pelvic pain as endometriosis in 2014 — I referred to the process of learning to use my body again as “recovery.” It was almost as if, even though I knew I had a painful and incurable illness, I naively thought my body would return to “normal.” Or maybe that I would be “the one” to manage it, “the one” who breaks the code to a rarely researched disease, “the one” who could elude chronic pain and have it all figured out.
I think every person faced with a sickness believes that of themselves, even for the shortest amount of time.
But as I write this, the throbbing in my left ovary admonishes me. It won’t be my last surgery. Recovery is not my reality.
My friends don’t always understand this. When I’m struck with a particularly difficult endometriosis flare-up, my phone lights up with optimistic emojis and “get well soon”s. I know they mean well, so I type out “thank you” with blurry eyes, instead of what I’d really like to say: “I won’t ever get better, but I appreciate the thought.”
There are times when well-wishes are less of prayers and more of expectations. Like when a friend said to me, “I thought you had surgery and were better.” Or when another commented, “Well, maybe they’ll find a cure for your disease, and you won’t have to be like this.”
I can’t fault them because I get it. I know it’s hard to look at a 26-year-old woman and see someone who will always be sick, especially when she’s your friend, your old college roommate, your coworker, your generation, your peer, you.
And it’s hard for me to not meet their expectations when pain and exhaustion claim me. I cancel plans last-minute. I complicate dinner arrangements with my limited diet. I fall asleep on the couch while my friends play a drinking game. I push off sex with my husband another night. I Skype-in for a meeting because I can’t manage a three-hour drive.
I used to be the first one there and the last one to leave. But now, I worry how much longer everyone will put up with me, knowing that I’ll never recover.
It’s no wonder depression and suicide are rampant among young women with endometriosis.
But in place of recovery, I’ve been given something equally as powerful: resilience.
Resilience is my answer to the all-too-common question: “How do you do it?” For patients with chronic illness or pain, it isn’t a choice, but rather, your only option.
And it comes at you quickly.
Within minutes of looking at photos of my surgery, my husband and I were given my “treatment” plan. “Just get pregnant now before it’s too late.” No pills. No pain management. Nothing.
Resilience is the power to say, “No, that’s not a treatment. I’m transferring my care.”
It’s the stubbornness in saying,“This is what I need, and I’m not giving up until I get it.”
It’s the refusal to accept “I’m sorry, but the soonest your doctor can see you is in four months.”
It’s the empowerment from sharing your story, connecting with other marginalized women and battling the stigma stuck to your organs, your medication, your lifestyle.
It’s the rejection of limitations others put on you. “Should you really be doing that, if you’re so sick?”
It’s snapping at physicians with “I’m the patient, not my husband. If you’re talking about my care, then talk to me.”
It’s reclaiming my body through exercise, wearing what I want, loving myself and learning to live with a disease that strives to suffocate me, to leave me a shell of who I worked so hard to become.
It’s telling everyone, “This is my reality, and I’m not apologizing for it anymore.”
I wake in the morning to a goodbye kiss from my husband as he runs off to work. My little black dog nuzzles against my head, snoring softly. Staring at the ceiling, I take inventory of every body part, every nerve and every cell to see what hurts. My pain is low this morning, and I say a silent thank you as I push myself to sit up.
While I’ll never know recovery, I know gratitude. Endometriosis turned me into a fighter and an advocate for both myself and others. While I might forget that gratitude when my uterus feels like a fist clenching barbed wire, I’m comforted in knowing I have a support network and am surrounded by love.
I will no longer feel defeated by what I don’t have. Instead, I will overcome.
