Katie’s Story

For much of my life, my body has been enemy number one. I have felt trapped in this cage of flesh my whole life.

I dressed it up like a temple.

I treated it like a battleground.

I have done everything that I could think of to flee from it.

Now, I’m ready to be honest about what my body and I have been through.

I got my first period at age 11, and from then on I was suffering miserably. I was trapped in a body that was being dragged from doctor to doctor: poked and prodded, appendages pricked to rule out anemia, and countless birth control pills prescribed (and taken) in hopes of reducing my excruciating pain, along with the stress and hassle of dealing with a super-plus menstrual flow.

While my parents were concerned and involved when it came to diagnosing my physical symptoms, I was given very little information about what was happening to me and why. I was finally diagnosed with Endometriosis at age 14. Thankfully, that was much earlier than most women are when properly diagnosed.

Surgeries followed: from laparoscopic (still the only way to formally diagnose Endo) to the more invasive colonoscopy and upper endoscopy (both of which I had to remain awake for). Then came injections of Depo Provera in my hip every three months for the next eight years. I missed sixty days of school a year due to the insurmountable amount of pain and nausea my body was put through every month.

Once I’d been properly diagnosed, I was given a vague description of the disease: mostly just what can happen in terms of having children later, which seemed to be the main concern of healthcare professionals. I was shown pictures from my laparoscopic surgery, revealing tissue in my body that the endometrial lining from my uterus attached itself to, which continued acting like endometrial tissue, having periods every month, creating a reservoir of blood around my internal organs. And that was it.

Here are some questions I have posited over the years, and the answers in a nutshell:

Is there a cure? “No.”

What causes the uterine lining to start acting that way? “No clue.”

So, is it an autoimmune-type disease? “Maybeeeee??”

Not much has changed in the fifteen years since I was diagnosed. (For a brief and comprehensive rundown of what is known about Endometriosis see Cristen Conger of “Stuff Mom Never Told You” talk about it here. The only difference now is that women are beginning to speak about their experiences with the disease: the physical, emotional and psychological tolls, and all of the work and life experiences missed out on, our self-care and self-discovery delayed. We suffer from intense physical pain that creates a personal culture of shame for not being able to work through it, fear of appearing weak or drawing attention to oneself, and all of society’s accompanying judgments.

Lena Dunham and Padma Lakshmi spoke about their experiences in a well-known issue of Lenny. As I read their stories, it felt as if I had written them myself. Their feelings, fears, and experiences were almost identical to my own. Often, many sufferers experience doctors chronically misdiagnosing them with other ailments, or brushing patients off, because medical professionals have a history of not taking women’s concerns and pain seriously enough. As a result, doctors confuse endometriosis with ailments like appendicitis –or, brush it off as “whining” or a mental imbalance — and tell them to go home. All the while, women are suffering with a painful, dangerous condition.

One of the most difficult things about having Endometriosis was how alone and unrelateable I felt. Lena Dunham and I are very close in age, and if I had known that I wasn’t the only adolescent person to have been diagnosed with this disease, it would have made all the difference. Maybe I wouldn’t have beaten myself up so hard about feeling like a failure of a human being. Maybe I would have given myself a chance to be a teenager during the times I was feeling well. Maybe I wouldn’t have gotten in the habit of living my life totally disassociated from my own body, and instead allowed myself time to heal. Maybe I would have felt that I could leave my room and be more open and engaged with my family and friends. The impact endometriosis has on young women’s lives is much bigger than just the disease.

What I’ve realized is that every flicker of rage that moves through me has been greatly displaced. Instead of directing my anger to where it should be going, and should have been going my entire life, I internalized it, focusing it all on my body. My anger is more appropriately aimed at both societal conditioning about being a woman, as well as stigmas surrounding illness. There’s also the certain messages I received in my particular family culture. Our lives are so gendered and, as women or women-identifying people, so much of “taking care” of ourselves is wrapped up in superficiality that makes us products for consumption and use of the male gaze. And while my reaction to that is typically, “fuck that shit,” a total brain shut down usually follows it. Most likely out of self-preservation. So, instead of taking care of my body and building a relationship with myself, I grew resentful of it and ignored it.

My body and my uterus, in particular, has been such a burden on me that I even refused to engage in any potential romantic relationships because I felt that I would only be a burden to the other person. Who wants a diseased girlfriend who’s scared to have sex? In this hyper-sexualized culture we live in, I figured no one would be willing to be patient with me, especially as a teenager. That my pain — and my emotions — would never matter that much to anyone.

And I was right. My pain didn’t matter when I got my first period and was made to feel like I was being a jerk, self-indulgent, because I was hurting. My pain didn’t matter when I would close myself off in my room because I hadn’t been taught coping skills, and felt like I was a monster or just nonexistent to my family. My pain didn’t matter when my grandmothers would continually bring up and imply the importance of having children. My pain and my being didn’t matter when a coworker who, earlier in the evening of a holiday work party, told me that my idea of consent between two people was “a fairytale,” raped me. And in that particular case, I disconnected from my body a second time.

I was also never apologized to in any of these situations.

Self-care is a tricky thing. It’s difficult to know what it actually means. We’re constantly telling each other to take care of ourselves, but what does that really entail? Is it annual doctor visits and regular yoga and kickboxing classes? Maybe it’s nights out with the girls and a planned vacation here and there. Maybe.

While all are important, they also just feel like another thing I need to put on my to-do list in order to fulfill the idea that I have a healthy, fulfilling, and successful existence. Even if I’m having a really good day, or week, or few months I never feel like I’m fully taking care of myself. I feel like I’m constantly sacrificing something. I wish I could just go through life feeling nourished, accomplished, and driven. I wish I could feel comfortable in my own body without having to constantly be reminded of or defined by my reproductive system.

Ultimately, I always had this sense that terrible things happening to me were somehow my fault: as if the Endometriosis was my fault. But I didn’t choose or attract any of those things. Telling women that suffering from Endometriosis comes with the territory of being a woman, and to just deal with it, is a problem. We can’t let our elected officials strip women’s health and reproductive rights coverage from our national health care laws.

So many of our stories are shared: and we don’t always know that because society has shamed our completely human experiences into silence. I volunteered to escort patients at an abortion clinic recently. There were only three protesters there (since the terrorist attack on a Planned Parenthood in Colorado, the swarms of regular protestors that typically line the block were laying low) and a reporter. The reporter asked me a couple of questions one of which was “Do you feel safe as a volunteer?” I replied that I did, although, I know the great risks in being an escort. The reality is I could be killed volunteering at an abortion clinic, but that the risk is worth it if it begins to change the perception of women being shamed for being born with female sex organs and for making decisions for themselves. All decisions, let alone ones concerning our bodies. Because the reality is also that because I exist in this world as a woman, I am a target no matter where I am or what I’m doing.

I’m Katie. This is why I’m with WHARR.

Follow my adventures @ktjlouch on Instagram; my misadventures at Katie Louchheim on YouTube; and my specifically musical adventures at http://www.katielouchheim.com/

To support women and teens with Endometriosis and research of the disease please visit the Endometriosis Foundation of America.

To support women’s health and reproductive rights in general, please support Planned Parenthood and other similar institutions and organizations.