Here at Autoimmune Paleo, we don’t usually write about specific autoimmune diseases. Our mission tends to be broadly focused on the shared roots of autoimmune disease and the practical implementation of dietary and lifestyle approaches that are beneficial in managing those various diseases and other forms of chronic illness. In this case, we are focusing on the “seeking wellness” part of our mission.
The other part of our mission is “building community.” We work to do this in all sorts of ways, but for me personally, one of the most important actions is raising awareness and “rallying” around the causes close to the hearts of our autoimmune community members.
This month I decided to step out of the normal pattern to focus on a specific disease, endometriosis (“endo” as it’s known on the mean streets), because women who have it are in many cases also fighting additional autoimmune diseases. One in ten women have endo, and based on our blog traffic, that’s at least 13,000 women in our community alone. I am one of those women. March is a particularly poignant time to talk about this disease, because it is Endometriosis Awareness Month. I see endo, more than any of my other autoimmune diseases, as a social justice issue and I want to do my part, on behalf of all the women suffering with it in our community, to raise awareness.
Before we dig in, let’s get a few details worked out. Endo is one of those tricky diseases on the autoimmune list, because it is not yet firmly classified as autoimmune, but considered a “suspected” autoimmune disease. Personally, until scientifically proven otherwise, I operate under the “if it quacks like a duck” rule. Having two other confirmed autoimmune diseases, I can say without hesitation that endo feels suspiciously “autoimmune-y.” Its status as an autoimmune disease is just one of many uncertainties surrounding the disease.
What is known is that it is a disease in which tissue similar to endometrium, the tissue lining the inside of the uterus, is found outside the uterus. This tissue can grow outside of uterus on other organs, commonly the ovaries, uterus, bowel and pelvic sidewall, seriously injuring or even destroying these other organs. In these locations the tissue responds to cyclic hormonal changes, just like the tissue inside the uterus, which causes inflammation, bleeding, and A LOT of pain. Severe pain during periods is the hallmark symptom of endo, but other common symptoms are infertility, painful ovulation, pain with or following sex, abnormal bleeding, general on-going pelvic pain, and fatigue.
I know that many of us in the autoimmune community have faced injustices while seeking help for our diseases, regardless of what they are, so why do I hold endo apart as a distinct social justice issue? The core of a social justice is unequal access, support, or treatment, which is based on a trait. After dealing with endo for over twenty years, I’ve come to recognize something I would never have considered early on…the trait that results in unequal access and support for endo is gender. Menstruation is unique to women and dismissal of this disease as a “female problem” has lead to not only difficulty classifying endo as an autoimmune disease, but also even larger failures in thorough medical research and appropriate healthcare options.
I see this social injustice in four places:
1) There is breakdown in access to accurate information. Needless taboos surround discussion of women’s periods, which means many women have little to no information about what can be considered a normal menstrual cycle. Sadly, details about endo, if they are able to get any, amount to the worst kind of misinformation, often delivered by a gynecologist sticking to the status quo. Women are given incorrect information on everything from theories about the disease, to symptoms, and ineffective, even harmful, treatment methods. I was told on many occasions that “all women have cramps” and I was even instructed to “get pregnant” to treat the disease. This lack of access to good information leads to women being at a serious disadvantage in their attempts to take an active role in managing their disease.
2) There is a crisis in access to appropriate healthcare options. Currently, the only way to diagnose the disease is through visual confirmation during laparoscopic surgery. It is lack of research that has left us with only this invasive option, rather than accurate imaging or blood serum markers. The reliance on surgical confirmation of disease means a damaging delay in diagnosis for most women. It doesn’t stop with diagnosis. Although a combination of approaches, including a form of surgery, called excision, performed by an expert surgeon, along with dietary modifications and pelvic floor physical therapy are the most effective treatments (check out the Center for Endometriosis Care website for solid deets), what women are more often subjected to is outrageously outdated. I belong to several online support groups for endo, some with membership well over 10,000, and I see women sharing daily that they’ve been told they must have organs removed (even though hysterectomy is not a cure for endo) or that they must agree to hormonal manipulation that carries with it devastating side effects. This lack of access to appropriate healthcare options amounts to outright failure in women’s care.
3) There is also a crisis in the support offered for the pain experienced with the disease. The pain has recently been compared with the pain of a heart attack by endo experts! I can’t imagine any other situation where we would not take a person seriously if they were reporting pain of that kind. The pain can cause fainting, vomiting, sweating, rapid heart rate, and unrelenting cramping, but seeking help is often met with humiliation. I know this first hand, as I’ve had more than one emergency room visit where nurses or doctors literally rolled their eyes. Women may even overlook health emergencies, due to the fear of being told it’s “just a period” or being treated like an addict. Tragically, I observe over and over in support groups serious depression, even suicide. These realities for some endo patients are the result of enduring excruciating pain and feeling that effective treatment is simply unattainable.
4) Finally, there is a failure in terms of support for the financial losses of endo. A disease of “the private parts” is rarely legitimatized when it comes to paid sick leave or even in the worst cases, recognized as a medical disability. In 2012, the World Endometriosis Research Foundation carried out a study that determined endo costs the average woman, globally, over $12,000 a year in healthcare costs and lost productivity. As one Australian woman said, “It means that in our most productive years – and I don’t mean ‘reproductive years’ – women are being forced out of jobs, they can’t work physically. There’s a lot of really devastating effects.” That is an enormous burden for women with endo and their families, but these financial losses are not even a part of the conversation we are (or more accurately, aren’t!) having.
Endo is not rare. There are an estimated 176 million of us suffering with it worldwide. Dismissal of this disease on the basis of gender makes it a valid social justice issue. If we use all our voices, we can change that for the girls in generations to come. I encourage you to join me for the rest of this month and add your voice to this cause. I’m proudly providing the rallying cry that our community needs to #fightlikeagirl.
Resources To Help You Get Informed and Take Action:
- Endo Action Alliance (they are making moves!)
- Endo March (the march is tomorrow, March 19, 2016!)
- Endo What (the first documentary!)
- Center for Endometriosis Care (solid, caring, accurate info/resources)
- BTW, yellow is our color. 😉