A Dynamic Duo: How My Mother and I Are Fighting for ME Awareness

For decades, my mom and I have been a dynamic duo using the arts to creatively fight for women’s rights. And now we are using the arts to fight for my life.

In the ’60-70s, during the burgeoning “Women’s Liberation Movement,” my mother, Bobbi Ausubel, co-wrote America’s first feminist play, “How to Make a Woman.” After each performance, cutting edge and ruckus consciousness-raising groups helped women and men grapple with just how much gender roles dictated their lives.

As a little girl, I couldn’t care less. I played with my toys under the adults’ chairs, impatiently waiting for my parents so we could finally go home. Such was the life of a child of early feminist leaders.

Yet the women’s empowerment message sank in. As an adult, I published a collection of true tales of women’s bold deeds and brazen acts. Then, my mother and I jointly adapted my book for the stage, which resulted in over 1,000 events – theatrical productions and open mikes – where audiences shared their own real-life stories of courage.

But now my mom and I have a new focus: we are fighting for me to get my life back. And once again our work involves a cutting-edge women’s issue.

I have ME (myalgic encephalomyelitis), a devastating, chronic neuro-immune disease that affects nearly 2.5 million Americans and more than 17 million worldwide, a majority of whom are women. The disease is so debilitating, it often leaves me too exhausted to do basic tasks, such as cook a meal. And it leaves my brain so muddled and foggy, I often have to pause mid-sentence to remember what I’m talking about.

ME is commonly known as chronic fatigue syndrome, a belittling name now rejected by many patients and disease experts. There is no cure and no FDA-approved treatment for this disease in which 75-85 percent of patients are women. It receives little attention and barely any research funding.

Lack of research, coupled with negative stereotypes of either the “lazy lady patient” or the “hysterical woman,” has translated to lack of help and treatment for people with ME — both male and female patients alike. It is not an understatement to say that the federal government neglects ME: For the past 30 years, they have given ME only about $5 million per year in research funding. That’s less than male pattern baldness.

One-quarter of ME patients are homebound or bedridden; 50-75 percent are unemployed because they are too sick to work. Many, like me, have spent decades tethered to our beds, too weak to function, with little or no medical or governmental assistance. Some people with ME are too weak to feed themselves.

The prestigious National Academy of Medicine (formally the Institute of Medicine), stated in 2015 that ME is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients. They said ME patients are more disabled than other highly disabling diseases, including MS, stroke, diabetes, renal failure, lung disease, heart failure and various cancers.

Yet about 90 percent of people with ME are undiagnosed or mis-diagnosed because few doctors know enough to diagnose and treat the disease. A majority of doctors are unaware or mis-informed — after all, ME is often not taught in medical schools and the CDC disseminates misinformation, such as that exercise will help us (in fact, it hurts us). Even with recent major scientific advances regarding ME, the lack of federal funding for research means highly respected scientists must rely on crowd-funding.

No cure, no treatments, no research funding. It is understandable patients struggle to hold on to hope.

Now, with me bedridden much of the time, my mom and I spend our days organizing demonstrations with MEAction in front of the US Department of Health and Human Services (actually, this is not unlike putting on a theatrical production), staging our women’s empowerment play as fundraisers for ME organizations, lobbying Congress and securing State and City Proclamations for ME Awareness Day, held each year on May 12th. Thanks to our hard work and that of the MassCFIDS/ME Association, Massachusetts Governor Charlie Baker issued one last week.

Needless to say, in our dynamic duo my mom is more like Batman and I’m more like Robin: She is doing most of the heavy lifting and I’m supporting her.

This May is International ME Awareness month (focusing on May 12th). And like every May, my mom and I will be fighting for the rights of people with ME. We want hope and healthcare equality to be granted to these disabled yet neglected Americans. And you should, too. After all, most of them are your mothers, daughters, sisters and female friends.

This post originally appeared on Ms. Blog.

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