This essay was first published on MsMagazine.com.

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 1000 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 disables up to 2.5 million Americans, 17-20 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 that does not reflect the true devastation of the disease and is now rejected by patients and disease experts alike. There is no cure and no FDA-approved treatment for this disease in which 75-85% 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 men and women patients. It is not an understatement to say that the federal government neglects ME: For the past 30 years, they have given ME only about $6 million per year in research funding. That’s the same as male pattern baldness, which does not leave anyone bedridden for years.

One quarter of ME patients are homebound or bedridden; 50-75% 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% 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 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 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 research organizations and cutting edge advocacy groups, lobbying Congress with still other advocacy groups and most recently securing State and City Proclamations for ME Awareness Day, held each year on May 12th.

Rivka

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 as we fight for the rights of people with ME. But we are certainly a team. 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 women friends.

Rivka Solomon (@RivkaTweets) is a writer in Massachusetts. She is working on a book about her 27 years with ME.

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6 Responses to “Mother and Daughter Dynamic Duo: Fighting For Women’s Health Equality”

  1. Jane Pannell Says:

    Thank you so much for publishing this important article. As a former HIV nurse researcher disabled by ME/CFS, It is gratifying to finally see accurate information disseminated about this serious illness which has been neglected for far too long. Those of us working for more awareness and an increase in federal research funding need all the help we can get. If you would like more info, please visit MEaction.net or solvecfs.org. Thank you.

  2. Jennifer Berntsen Says:

    Thank you for publishing this very important article. Millions of us have languished for years or decades, hoping that things will change, as we see our friends in the community and for myself, my own family members die from this horrific disease. Awareness of facts makes all the difference, thank you to the writer and thank you to Disruptive Women for seeing the importance of this.

  3. Gloria B. Azubel Says:

    This research needs to be funded. ME/CFS will not have a good diagnosis or cure until $$$$ are spent on the much needed research in this new area of science.
    How can we be “disruptive”?

  4. Rivka Says:

    Thank you so much for publishing this important story about this ME/CFS patient community that has been neglected for decades and decades. It is time for them/us to come out of the shadows! The government must fund research into ME/CFS so that we can come out of the shadows

  5. JohnPannell Says:

    Thanks for this story. I am the proud father of five Disruptive Women! I am appalled at the level of denial and ignorance about this disease which has stolen the lives of my daughter and so many others who should be out in the world contributing to society.

  6. Margaret Bonacci Says:

    This situation is appalling. Thanks for giving it attention. This mom and daughter team is very impressive. I hope the government will do the right thing and fund some overdue research.

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