This Mother’s Day, We’re Fighting For Women’s Health Equality

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’s and 70’s, 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 could 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 Myalgic Encephalomyelitis (ME), a devastating chronic neuroimmune disease that disables up to 2.5 million Americans and 17-20 million people worldwide—a majority of whom are women. The disease is so debilitating, it often leaves me too exhausted to do basic tasks like cooking. 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 patients and disease experts. There is no cure and no FDA-approved treatment for this disease in which 75 to 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—men and women 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 $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 to 75 percent are unemployed because they are too sick to work. Some are too weak to feed themselves. Many, like me, have spent decades tethered to our beds, too weak to function, with little or no medical or governmental assistance.

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—moreso, even, than 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 misinformed. ME is not taught in medical schools. The CDC disseminates misinformation—such as claiming exercise will help us when, 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 that 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, 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 12. Thanks to our hard work and that of the MassCFIDS/ME Association, Massachusetts Governor Charlie Baker issued one this 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 year, May 12 and Mother’s Day fall on the same weekend. So all weekend long, 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 women friends.

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

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Comments

  1. cynthia abatt says:

    Thank you posting this important article. I am a friend of someone who has been living with ME for decades, and I don’t understand why, when there are up to 20 million people afflicted, that people have to continue to suffer without adequate resources.
    To show your support, post a photograph of a pair of shoes to social media with the hashtag #MillionsMissing

  2. Thank you to Ms. Magazine for posting my essay about this important topic. I hope readers will join me in supporting people with ME. We need your help! To help, please contact MEAction (www.MEAction.net) — the national organization behind the ground breaking MillionsMissing demonstrations you see in the above photos — or contact SolveME/CFS Initiative (http://solvecfs.org/) and Open Medicine Foundation (https://www.omf.ngo/). Get involved!

  3. Brava Rivka and Bobbi. Your efforts are changing the lives of individuals with ME around the world. My daughter and I praise your work. Thank you. We have been told by many health care providers that my 9 year old daughter is not sick, nothing is wrong with her, she must be avoiding something at school… She has been ill with ME for over 2 years now and she is fighting to be well every minute of her day. She is not avoiding anything, she is facing her illness bravely. I am so proud of my daughter and all who are living the best life possible with ME.

  4. Reprice says:

    Thank you Ms. Solomon and Ms. Solomon’s mom for taking on the gov’s resistance to funding research for, education of, and securing dignity for those woman and men living with this debilitating infliction … ME/CFS. As this article rightly points out the majority of people living with ME/CFS are woman, begs the question if it were predominately male suffers would the illness still be marginalized? Hat’s off to Ms Solomon and her mother for all their important work over so many years and currently shining a light on, and fighting for those living with a horrible and neglected illness. Great article.

  5. What a great story for mother’s day! I appreciate Ms. covering this aspect of activism. Thank you for sharing information about M.E.

  6. Leah Williams says:

    Thank you, Rivka, for all that you and your mother do on behalf of patients with ME/CFS. It is unconscionable that this devastating illness has no diagnostic test, no FDA approved treatments and no cure. We need more awareness among medical professionals and more research funding.

  7. Thanks for the article. Made me cry. Thanks Ms for supporting this cause.

  8. Thank you Rivka . As a caretaker of an adult son with ME/CFS your mom and myself are the crusaders and we will not be stopped by the institutions that claim to help us.

  9. Cheryl Boese says:

    Thank you Rivka and Bobbie for all the work you have done for those of us sick with ME. You are both great mentors for new advocates and inspire everyone who struggles with ME to take some action. Sometimes it’s emailing a Congressional Rep from bed, sometimes it is organizing a protest. If we all do whatever we can, there will be a day when ME is recognized, research is funded, and effective treatment is available!

  10. Susan Smith says:

    Thank you Rivka, and your mom, for all you do to raise awareness for ME, and for writing this. I have ME as well, and my mom helped me with the #MillionsMissing protest in Lansing last September. She is coming over soon for Mother’s Day dinner, because I’m too sick to leave home. Here’s to our moms, and to finding a cure!

  11. Mothers and daughters, friends, East Coast, West Coast, we are all intertwined with a common thread of loving someone with a grossly understudied illness. Shut into darkened rooms until quietly forgotten, we are not gone. This week is a time to speak out. To hold to account, to give thanks to those wise ones pushing forward with so few resources, to bring to light this illness that affects unto 2.5 million people within the US. Today are not forgotten. July 5 will be the 32 year I along with many of my travel abroad class mates were diagnosed with M.E. in one morning overseas. At the time in the U.S. a strange flu like illness was reported to the CDC in New York, California, and Nevada but it was given a different name: Chronic Fatigue Syndrome. It does not really matter if we were forgotten and neglected because of a bad name, or because we may have been over shadowed by the newly re-discovered Ebola Virus in Africa, or the equally scaring AIDS virus erupting is Cities across the world. We were forgotten, neglected, ignored by most… but not all medical professionals. Today is a day to bring awareness, step out of the shadows and give thanks to people like Bobbie and Rivka who share their story, and to the brave researchers who believe and continue to bring creativity and personal resources to this global problem.

  12. Garrett says:

    Great Article. I wonder where research would be if this disease had been properly funded since the early 80’s. Thank you for your hard work and advocacy.

  13. Thank you for writing the article and a huge THANK YOU to you and your mom for fighting for those of us who are are no longer able to fight. I deeply appreciate both of you! Thank you Ms. for sharing this article with the world!

  14. Deepest gratitude to Rivka Solomon and Ms. Magazine for this VERY important essay about a massive physical health problem that is largely invisible…and when anyone does take notice, it way too often takes the form of erroneously classifying it as “all in the patients’ minds or imaginations.” And gratitude to Rivka Solomon and Bobbi Ausubel for their activism about this, which Rivka stunningly does while suffering terribly from this often utterly debilitating condition.

  15. Jane T. says:

    Thank you Rivka for this great piece and for your work in Mass. and elsewhere! Thank you Bobbi for coming along side Rivka and also helping this community. Thank you to Ms. Magazine for publishing this and helping make visible our hidden suffering and need as ME/CFS sufferers. 11 years ago today (Mother’s Day), my life forever changed. I got terribly sick, it took all I had to get to the restroom at 14 y.o…there’s no way I could make it up a flight of stairs at the house I was staying at w/ my family on vacation. My life is limited now. And every Mother’s Day I get to remember that horrible feeling on a day that should be wonderful and happy, celebrating my mom. We’re fighting for our lives, our futures, and our rights as human beings…b/c we just happened to get sick w/ ME/CFS. And it could happen to anyone.

  16. Rivka’s story is devastating, and yet uplifting. I count myself fortunate to have had a chance to meet and work with Rivka and her incredible mother Bobbi. They’ve been strident voices advocating for more recognition and investment by the NIH on behalf of 2.5 million Americans who suffer daily from the relentless disease ME/CFS. My daughter, who was also stricken with ME/CFS, is lucky to have access to world-class doctors in the SF Bay Area. But even so, there are no treatments and no cure, and because ME/CFS does not discriminate, we are all vulnerable. It’s a travesty that after decades, the NIH and our medical community have not changed the equation for our gravely ill loved ones. Thank you, Rivka, for helping tell the story of ME/CFS.

  17. Kathryn Stephens says:

    Thank you so much, Ms Magazine! It is heartening to see you highlighting the work of our fellow ME patient, Rivka Solomon, who has been so instrumental in fighting the injustices of our government agencies who should have been finding solutions to this dreadful disease long, long ago. Rivka and her mother have been on the front lines almost every single year I have had ME…that’s a long, long time, also. I am so appreciative of her work, but it will take your readers to join us, to raise the awareness and demands for funding commensurate with the burden of the numbers of patients sick and even dying of ME. We need all of you to help us demand appropriate testing and clinical trials for treatment. Remember the HIV crisis, and how those patients who were still alive gathered together and fought in the streets and agencies until they were properly tested and funded? Well we ME patients can’t do that…we are too sick! We cannot maintain energy levels to allow us to be present in such a way. The fact that demonstrations of patients have taken place is a miracle, and believe me when I tell you those patients paid dearly for their activism. So, readers, please help us; we need advocates to stand in for us in your representative’s offices, in your local medical societies and conferences, to ask that ME be taught in medical schools, and in your churches and schools, so that everyone knows that anyone can come down with ME at any time. No one is immune. Not you, not your parents, your children, your colleagues. Help us. Thank you.

  18. Yay for publishing this, Ms. !
    !

  19. Jane Pannell says:

    Thanks for this timely article. More people are aware of this disabling disease than ever before, due to advocates like Rivka and her mother. But it is not enough. We all need to ask our Senators and Congresspeople to pressure NIH to greatly accelerate the pace of research. Too many women have already lost so much to ME. We cannot let the funding inequity continue.

  20. John Francis says:

    Brava, Rivka and Bobbi! I am the father of a once vibrant young woman felled by this disease. She has lost her career and has been forced to move back in with her mother and me, when she should be out in the world having fun and being a productive member of society.
    With the GOP working hard to demolish the ACA and decrease funding to the NIH, this and other diseases primarily affecting women will be neglected even more than they have been. Shameful!

  21. Pamela Edelson says:

    I am so thrilled to see this article in Ms.magazine. For too many years, women who have ME/CFS have been marginalized by the medical profession mainly due to their gender. Rivka has competently described the devastation this illness brings to the patients and to their families. I am also the mother of a daughter who was felled by this illness at a time when she should have been growing and exploring her life. She is unable to work and live on her own at present. We need change to happen now so that young women like my daughter can have a chance to have an independent life. Thank you for posting this article!

  22. Dear Rifka and Bobbi,
    I am grateful to MS for publishing this amazingly important article. Rivka, the article is so well written,
    informative and very clear. I love the photo. I would hope the article could be on line and perhaps on Youtube as you or both of you passionately read it and give all the ways people can help.

    Much love as I visualize the situation totally changing

  23. meg bonacci says:

    Thank you, MS magazine, for posting this article. There are such terrible stereotypes about people suffering with this disease and they need to be smashed. My sister, an ME sufferer, is not lazy – she wants to work and be productive and I want my sister back. Screw male pattern baldness – we need more money and research for ME. That man get get a toupee so my sister can get her life back!

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