“Yes! The Grinch! No school, Mama?” says my 4-year-old daughter quizzically. She looks confused.
“Not right now. Mommy hurts too much to drive you to school right now, so can you come upstairs and rest with me?”
My 4-year-old outstretches her soft, pudgy, baby-like hand to grab mine.
“Yes, Mama. I hold your hand,” she says.
I walk hunched over with my daughter’s hand in mine desperately trying to hold back the tears that I feel welling up in my eyes. I can act tough, like the endometriosis isn’t impacting my life. It’s an invisible disease after all—I don’t have to wear any of its damaging effects on the outside. My appearance isn’t marked by this disease (except, of course, the scars on my belly showing a storyline of past, failed surgical treatment attempts).
It’s not just “bad cramps.” It’s your worst case of bad cramps, amplified by a million-gazillion. Over-the-counter meds barely touch endometriosis pain for many sufferers. No one’s faking their pain. No one’s weak in this disease.
In the past, endometriosis has stopped me from going to work, running errands, cooking dinner and exercising—all of which is frustrating and inconvenient to my daily life. But not being able to get my kid to school, that took my disease to a whole new level. Seeing the impact that endometriosis is having on my daughter’s life is hard to watch. I can’t help it—I feel like a shitty mom. I feel guilty.
As my daughter and I start up the stairs, I want to howl out in pain. It’s similar to labor pain, but like one long contraction. I feel like I could pass out from the pain. I grow more clammy, dizzy and emotional with each step. I focus. Just get to the top, I say to myself. I instruct my 4-year-old, “If something happens to Mommy, like I fall or I go to sleep and you can’t wake me up, run outside and knock on doors to find a neighbor, okay?”
I know the minute she opens the door to the outside our house alarm will go off and alert emergency responders. Either way, she’ll get help.
The thought of my daughter trying to shake and wake me from an unconscious state is almost more than I can bear. What if she watches me fall and get knocked out? She would be absolutely terrified—traumatized really.
She looks up at me with her worried eyes.
“Is it because you’re bleeding from your butt again?” she asks. My husband and I have tried to explain what happens to mommy when she gets her period, but clearly my daughter’s missed a key detail.
“Yes,” I say.
“Will I have to bleed from my butt when I’m older?” she asks.
“Kinda, you bleed from your vagina. But, not like this. You won’t have to hurt like Mommy hurts,” I say.
Unfortunately, that’s not entirely true.
When you have endometriosis, cells that are usually found in the uterus grow outside of it. The cells can grow on your ovaries and bowels. The growths inflame and cause chronic pelvic pain, excruciating periods, and infertility in some women. Research shows there is a genetic link. Endometriosis is hereditary.
As much as I want to shield my daughters from my suffering, I can’t. They see the toll it takes. I can only be a voice for this disease and an advocate for more studies. I can push, through pain, for more research so that my daughters and the daughters of millions of sufferers don’t have to go through this debilitating disease.
My kids know Mama is not weak, and neither are the countless other women who suffer. Lena Dunham, the creator of the hit series "Girls", isn’t weak. She once took a temporary hiatus from her career to deal with an endometriosis flare-up. "Top Chef" host and mother, Padma Lakshmi, isn’t weak. She’s channeled her pain and struggle into strength by writing about endometriosis in her book, Love, Loss, and What We Ate: A Memoir.
And while I can talk about the disease, and celebrities can talk about it, most medical professionals don’t get it. Many believe endometriosis sufferers are just wussies, that they can’t handle pain.
Imagine a young woman who’s just reached puberty and is writhing in pain. And she hears, “You can handle it.” “It’s not that bad.” “Are you sure you’re not faking to get out of school?” That’s been the reality of so many sufferers—young women and adult women.
We have to change the conversation. We have to tell sufferers that we’re with them. That we’re going to fix this. That we’re going to find ways to make them better. We have to share our stories, connect and band together. We need to show support and put money behind research for more viable treatment options. We need to find a cure. There’s currently no cure for endometriosis.
We can be helping the women and mothers in our lives who are suffering through this disease. We can be helping daughters around the world who may be predisposed to the disease. We can help find treatments and cures before they too suffer. There are girls who still stand a chance of being happy, healthy and endometriosis-free.
This article originally appeared on the publication Scary Mommy in April 2016.