Well, I’m pretty jet-lagged! I returned yesterday from Stanford University, where I was a guest and speaker at an international medical conference, Stanford Medicine X. Having the chance to connect with such a wide range of stakeholders in healthcare and medicine — including other patients— was remarkable. Not only were the professional connections invaluable, but perhaps more so, the friendships. The sense of camaraderie. Rare is the day that I don’t feel ashamed and like I need to hide my illness from those in my day-to-day life.
I have a chronic, progressive and as-yet incurable disease called Endometriosis. I wrote about what it feels like to live with this disease for The Huffington Post, in fact; with the hope that it might help bring awareness to the condition.
This week The Guardian ran an amazing feature about endo, and I was excited because it coincided with the presentation I gave at Stanford.
My body is begging me to be still.
Yet, to be still is nearly impossible. The pain is twisting and wringing, and no matter what I do there are times when I can’t get comfortable. I lie flat, then I lie on one side with my knees to my chest. Then I curl into a tiny ball. Then I’m splayed out, half my body draped over the side of the bed, my head touching the floor. Then I’m squatting, my chest against my bed, grasping the sheets tightly. There are times when I feel as though I want to stretch my body out until my limbs lose all their elasticity. Other times, my body seizes up and tries to be small, curling into a fetal fibonacci.
Having the opportunity to present was amazing — but even more so, finding “my tribe” of fellow patients living with a myriad chronic illnesses was really affirming and gave me a sense of, I can survive this. I am surviving this.
Endometriosis is a disease of the female reproductive system. The lining of the uterus, which is shed when a woman has her period, sometimes spreads outside the womb and plasters itself to other organs and grows. It responds to the woman’s hormone cycle just the same as it would if it was in her uterus, where it belongs.
This causes inflammation in a woman’s pelvic and abdominal cavity. In fact, endometrial deposits have been found even higher, like on a woman’s liver or even BRAIN. The symptoms of endo vary greatly from woman to woman, and even within the same woman as time (and the disease) progresses. Pain and fatigue can be the most debilitating symptoms, and various gastrointestinal complaints can be a sign that endo has spread to the intestines. (I have chronic nausea, for which I take a medication that, if I did not have insurance, would cost $1,200 a month.)
Some women who have endo may not have any symptoms at all until they try to have a baby. Perhaps the most pernicious symptom of endo is infertility: a woman is likely to have had endo from the time of her first period, but since it takes on average a decade before she is diagnosed, the disease has ample time to destroy her reproductive organs. Not to mention her quality of life.
The sheer scale of the disease puts its number of sufferers on par with well-known “quality of life” maladies such as diabetes, which impacts roughly 13.4 million women according to US Centers for Disease Control figures.
… Where diabetes received more than $1bn in funding each year from the National Institutes of Health (NIH) last year, endometriosis received just $7m. That is down from $14m in 2011.
— Jessica Glenza, The Guardian
Conservative estimates say that 1 in 10 women have the disease — yet hardly anyone I’ve talked to has ever heard of it. Chances are, you know a woman with endometriosis. It might be your daughter, your sister, your wife or your best friend.
They might be suffering in silence, in large part because young girls are often taught 1. not to discuss their period and 2. that period pain is normal. These are dangerous lessons early learned, and personally I think it’s part of the reason that diagnosis takes so long.
The other reason is, quite simply, that are healthcare system is ill-equipped, our government uninterested, in supportive, collaborative treatment of women.
For me, it often felt like I was in 1910, not 2010, trying to receive care. The antiquated and puritan atmosphere of women’s health is one of many major barriers that women face.
When I’ve broached the topic, beginning with trying to figure out my own illness (which destroyed my life as I knew it about five years ago) I’ve been called “hysterical”, “a hypochondriac”, and even “vulgar.” We live in a society that thinks the word “vagina” is a vulgar term. I sit here day after day, week after week, year after year wondering if there’s any hope at all for not just a cure — but even more effective treatment. There’s no way for more funding to come if no one talks about it.
The political climate in the U.S. currently is vocally disinterested in promoting women’s health. Controlling it, yes, but not helping. It makes me wonder if the world is afraid of women like me being at full capacity, so to speak. I used to be the kind of gal who could take on the world in a day. Now, most days, I’m so physically exhausted, in so much pain, that it takes most of my will power to just do my job. Forget relationships! Forget a social life! Even taking this trip to Stanford, to speak about the very illness I’m battling, likely took a week of my productivity. As I write this, on the couch with a heating pad and a little something for the pain, I am functioning at a greatly diminished capacity.
Not that I had much to begin with.
Is this how society wants me to be? Is keeping me at this place of hardly-functioning what they want? Was I too intimidating when I was healthy and happy?
Well, I hope I proved when I was at Stanford, telling not just my story but the stories of millions of women worldwide, that the sisterhood of the traveling endometrial tissue is not giving up. We’re stronger than that. We have to be.
Hell hath no fury like a woman with rogue endometrial lesions.
A full transcribed version of my Stanford presentation is available here.
If you, or a loved one, want to know more about Endometriosis, find out more at Endometriosis UK. The UK is vastly ahead of the US in terms of awareness, research and treatment.
For all of The Guardian’s coverage of Endometriosis, including first-hand testimonials from more than 40 women worldwide, click here.