It was late afternoon, and I could barely get my body out of bed. In fact, I’d been in bed most of the last few days or was it weeks? Yet even with all that rest, my legs were still too weak to stand up.
It wasn’t that I lacked the desire to get up or that my limbs couldn’t function. I just didn’t have the cellular energy to power up my muscles. I couldn’t do anything except lie flat. And even that was exhausting.
This state of sheer debilitation was not new to me. And it hadn’t been going on for days or weeks. It’s been a decade.
On this day, in the spring of 2003, I pushed past the utter exhaustion, knowing that exertion would cause my condition to even worsen. But, I was determined. After all, I was being honored with a Women Who Dared award. It was being presented by the Jewish Women’s Archive and Hadassah Boston for my women’s empowerment work. Neither of the organizations honoring me, nor the 300 dinner guests coming to hear me speak, knew I did most of that work from my bed.
Should I tell them, I wondered? I’d written it into my speech. But would I have the guts to reveal my personal struggle in such a public setting?
The only thing the attendees knew about me was what they read in the event program: I was a Jewish woman dedicated to social change and social justice, in short, to tikkun olam (repair of the world). My activism focused on a book I’d written, celebrating the bold and courageous acts of women and girls. I then started a global open mike movement where women from all backgrounds gathered to share their own true tales of daring deeds, including celebrating the chutzpah they needed to fight back against abuse and sexual assault.
What the attendees didn’t know was this: I also had ME (myalgic encephalomyelitis), a devastating, chronic neuro-immune disease that disables 836,000 to 2.5 million Americans, 17-20 million worldwide. The disease is so debilitating, it often leaves me too exhausted to do basic tasks, such as cook a meal. It leaves my brain so muddled, I sometimes pause mid-sentence to remember what I’m talking about. Due to my disability, other people lead my women’s empowerment events. I usually can’t even physically get to them.
ME is commonly known as chronic fatigue syndrome, a belittling name that does not reflect the devastation of the disease. There is no cure, and no FDA-approved treatment for ME. Perhaps because 75 percent of ME patients are women, and doctors have historically minimized women’s pain and physical experiences, the disease receives little attention and barely any government research funding.
Lack of research, coupled with negative stereotypes of either the lazy or hysterical woman, has translated to dismissal, stigma and lack of help and treatment for all people with ME — both men and women. For the past 30 years, the National Institutes of Health (NIH) has pushed ME into the shadows by giving it less than $6 million per year in research funding. In fact, a recent paper shows that ME is severely underfunded by as much as 25-fold, based on its level of disease burden and prevalence compared to other diseases that NIH funds.
Recent hope that the NIH would treat ME with the full seriousness it deserves has fallen flat. Calculations show ME funding went from $6 million last year to $13 million this year — from a biseleh to a bisel (from very little to a little). Even $13 million per year is bupkis (nothing). By comparison, multiple sclerosis, a similar neuro-immune disease with half as many patients as ME, regularly gets almost $100 million per year in research funding.
Small, incremental increases in research funding will not address the severe crisis in clinical care that severely ill ME patients face. NIH leaders know this. They have publicly acknowledged that current ME funding is woefully inadequate. So where is the money?
Right now, 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 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 those with other highly disabling diseases, including multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and various cancers.
A striking 90 percent of people with ME are undiagnosed or misdiagnosed. After all, ME is not taught about in most medical schools. Worse, for decades, the guidance provided to doctors about ME, including that from the U.S. Centers for Disease Control, until recently misled doctors on the nature of the disease and stated that exercise will help us. In fact, exercise hurts us. Telling an ME patient to exercise is like telling a diabetic to eat sugar.
No cure, no treatments, little research funding, and doctors who regularly dismiss or recommend treatments that can harm: It is understandable that patients struggle to hold on to hope.
I made it to the Jewish Women’s Archive and Hadassah Boston event that night in 2003. My legs wobbled as I walked to the podium and my voice shook. Not out of fear, but out of sheer exhaustion.
But that evening, I embraced the sentiment behind my women’s work: I stepped through my trepidation to tell the audience members about my disability. They responded with warmth and support. Afterward, women came up to me and said they thought they may have ME, too.
Now, 15 years later, I don’t hesitate to share my story; I tell the world. In fact, I now use all the skills I learned from my women’s empowerment work to assist ME advocacy. When able, I organize demonstrations in front of the U.S. Department of Health and Human Services; raise funds for ME research foundations; get the support of elected officials; and secure state and city proclamations for ME Awareness Day (May 12th).
Perhaps you will join me in our ME community’s latest tikkun olam effort?
All around the country, we are holding screenings of “Unrest”, a Sundance Film Festival award-winning film by Jennifer Brea that is now shortlisted for the Oscars. The film is both a love story and a window into the hidden lives of people with ME. Tucsonan Alysa Nahmias is a producer on the film.
PBS’s “Independent Lens” will air “Unrest” on PBS 6 Plus on Jan. 14 at 11 p.m. and Jan. 15 at 4 a.m. PBS 6 Plus is available at Cox 8, Comcast 396, Over-the-Air 6.3 and 27.3. “Unrest” is streaming on the Independent Lens website through Jan. 23; find the link at facebook.com/unrestfilm.
With this film, and the extensive media attention the film is getting, the ME community is coming out of the shadows and into the light. And I, a Jewish woman who dares, am doing my part to help.
Rivka Solomon is a writer focusing on disability and women’s empowerment. You can reach her on Twitter (@RivkaTweets). This essay originally appeared on Jewish Women, Amplified, the blog of the Jewish Women’s Archive: jwa.org/blog/woman-who-dared-and-me.