At the National Organization for Women (NOW) conference held this past July, #MEAction’s co-founder and voluntary executive director, Jennifer Brea, was awarded the Victoria J. Mastrobuono Award for Women’s Health for her work championing the cause of people with myalgic encephalomyelitis through #MEAction, and her documentary film, Unrest.
The award is given annually to a physician, researcher, health advocate or a person who has made a significant contribution to health. ME researcher and doctor, Nancy Klimas, MD, received the Mastrobuono Award at a NOW conference in 2011.
Watch and read the powerful speech below that Jen delivered at the conference challenging the women’s rights community to care about people with invisible illnesses, to care about the rise of an autoimmune epidemic, and to fight back against the dismissal and disbelief of women who are sick.
Watch the video:
Thank you, Emily, and thank you so much Jan, Toni and everyone gathered today for this honor. I also wanted to give a shout out to Bobbi Ausubel and Rivka Solomon who I am sure are very much a part of the reason I’m up here today. I am so honored to receive the Victoria J. Mastrobuono Women’s Health Award. This has a particular meaning for me as I remember when I still didn’t have a diagnosis, and before she ever became my doctor, I watched the video of Nancy Klimas accepting this award in 2011 on YouTube. That was the first time I had heard this disease and this struggle framed as a women’s issue. And so this means a lot. I also want to thank NOW for being such a strong ally to my community, who for too long have been marginalized, made invisible, ignored.
And so I just wanted to take this opportunity to share a little bit of my story, how we got here and what we’re fighting for.
I was 28 years old. I was a PhD student at Harvard, and I loved to travel. I had just gotten engaged to marry the love of my life. Like so many of us when we are in good health, I felt like I was invincible.
Then one day I had a fever of 104.7 degrees. I probably should have gone to the doctor, but I’d never really been sick in my life, and I knew that usually, if you have a virus, you stay home and you make some chicken soup, and in a few days, everything will be fine. But this time it wasn’t fine. After the fever broke, for three weeks I was so dizzy, I couldn’t leave my house. I would walk straight into door frames. I had to hug the walls just to make it to the bathroom. That spring I got infection after infection, and every time I went to the doctor, he said there was absolutely nothing wrong. He had his laboratory tests, which always came back normal. All I had were my symptoms, which I could describe, but no one else could see. I know it sounds silly, but you have to find a way to explain things like this to yourself, and so I thought maybe I was just aging. Maybe this is what it’s like to be on the other side of 25.
Then the neurological symptoms started. Sometimes I would find that I couldn’t draw the right side of a circle. Other times I wouldn’t be able to speak or move at all. I saw every kind of specialist: infectious disease doctors, endocrinologists, cardiologists.
And then, a neurologist. He told my me that everything — the fevers, the sore throats, the sinus infection, all of the gastrointestinal, neurological and cardiac symptoms — were being caused by some distant emotional trauma that I could not remember. The symptoms were real, he said, but they had no biological cause. He diagnosed me with conversion disorder, which until 1980 was called hysteria.
I walked back the two miles to my house, my legs wrapped in this strange, almost electric kind of pain. As soon as I walked through the door, I collapsed. My brain and my spinal cord were burning. My neck was so stiff I couldn’t touch my chin to my chest, and the slightest sound — the rustling of the sheets, my husband walking barefoot in the next room — could cause excruciating pain. I would spend most of the next two years in bed.
How could my doctor have gotten it so wrong? I thought I had a rare disease, something doctors had never seen. And then I went online and found thousands of people all over the world living with the same symptoms, similarly isolated, similarly disbelieved. Some could still work, but had to spend their evenings and weekends in bed, just so they could show up the next Monday. On the other end of the spectrum, some were so sick they had to live in complete darkness, unable to tolerate the sound of a human voice or the touch of a loved one.
My disease is called ME which stands for Myalgic Encephalomyelitis. In the US, it is more commonly known as Chronic Fatigue Syndrome.
In those first years of illness, I would often go weeks without even seeing my kitchen, I had lost everything I thought made me who I was. And so I thought a lot about taking my own life. To keep living, I needed a way make sense of this senseless experience.
And so, I started filming myself.
My story is just one story in a community of millions. And our community – the community of people living with ME – is just one among hundreds.
We’re in the midst of an autoimmune epidemic. The Incidence of many immune diseases has tripled to quintupled over the last 60 years, and we have no idea why. There are at least 1 million Americans living with ME. An estimated 50 million living with an autoimmune disease. 80% of them are women. And it often takes years for us to get diagnosed. In the meantime we are dismissed, minimized, told that it’s “in our heads.”
45,000 – New cases of ME each year
30,000 – Post-treatment Lyme disease, a chronic condition with similar symptoms that also disproportionately affects women
That’s more than 3x the number who died or were disabled during the height of the polio epidemic, when an entire nation mobilized.
And yet, we have failed to mobilize. Why? I do think sexism has been a part of this, absolutely.
I think a part of it is that we haven’t yet learned how to see “invisible illnesses.” Illnesses like these that exist along a spectrum, that fluctuate, and where the most vulnerable among us, the most severely affected, the most marginalized, are never seen.
And I also think intersectionality matters. Women with disabilities and chronic illness have been for far too long ignored and excluded from the central goals and messages of the women’s movement; or in some cases literally excluded from spaces of meetings and protest due to lack of access. That I think and I hope is starting to change. And must change.
An intersectional lens matters because without it, we will never solve the core issues of modern feminism because we will fail to fully define the problem.
If you care about equality in the home, it’s important to remember that women with severe disabilities are twice as likely to live alone than men. (Because men are more likely to be cared for by their wives.)
If you care about equality in the workplace, how much of the gender pay gap is due to this issue alone? How many women make less money over the course of their lives because they need to work part-time, chose less demanding roles, or exit the workforce entirely due chronic illness?
If you care about access to healthcare, 80 years after the death of Freud, we are still diagnosing women with hysteria. And in Europe, we still forcibly institutionalize them. When we dismiss women, we contribute to the breakdown of their families, we deprive of them of their autonomy, and we put their lives at risk.
We would make great strides toward addressing lack of access to health care and frankly, the ignorance and helplessness of doctors when it comes to complex, chronic illness, if we invested in science. But when it comes to autoimmune disease, we spent on average just $12 per patient per year.
And if you care about inequality,50-75% of people with ME cannot even work part time. Many have an extraordinarily difficult time accessing disability benefits. And so if you are not married, or your husband leaves you, or your family abandons you because your doctors tell them you’re not really sick at all….so many of us end up living on the streets or taking our own lives. I saw there is a panel here this weekend on homelessness as a feminist issue. Absolutely.
This disease and diseases like it are not the totality of these issues, but they are a part of it. And so we will never solve any of these problems until we also solve this one.
Here’s how we’re trying to change the world.
We’ve started organizing a movement for people living with ME, through my organization, #MEAction. It’s called #MillionMissing. This year we had over 100 rallies and protests around the world. Next May, I hope we have even more.
But we’re new. We’re new to something you all have been doing for a long time. And mobilizing in this way costs us dearly. I have friends who went out and protested in San Francisco in September 2016 who are still not as well as they were the day before that protest. And so we need the help of able-bodied allies to fight along side us, to amplify our voices, to appear – in number – in public spaces.
We have local groups forming all across the country. And so please, sign up. Mentor an ME activist in your state. Lend a helping able-bodied hand. Mention us in your meetings on Capitol Hill (if you live in a red state, we especially need your help). Watch Unrest. Come out and join us next May.
And we’re also starting a broader conversation about gender bias in healthcare. Join the panel: Killing Me Softly, right after this session in San Martin.
Even once the true cause of my disease is discovered, if we don’t change our institutions and our culture, we will do this again to another disease. Living with this illness has taught me that science and medicine are profoundly human endeavors. Doctors, scientists and policy makers are not immune to the same biases that affect all of us. We need to think in more nuanced ways about women’s health. Our immune systems are just as much a battleground for equality as the rest of our bodies.
And so today, I’m asking for your help to elevate the struggle and the fight of people with ME and of people with all autoimmune and chronic illness. To make these issues a central and explicit part of the women’s movement. So that when we see a woman disappear from her life, so that when we see a woman dismissed…we no longer see it as her bad luck, her private, personal pain. We immediately recognize what has happened to her…we recognize it as systemic, and we know that this happened in part because we failed to believe women,
We failed to believe them when they told us they have been discriminated against, assaulted, and yes, when told us they were sick.
This is absolutely a problem we can solve, if we are in it together. Thank you.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the