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Why Sick Women (and Men) Must Rise Together

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The longer I am sick, the more I view what has happened to my body as a political problem, not only a medical or scientific one. We underinvest in health research for chronic illnesses, autoimmune diseases in particular. Many of these diseases hit women hardest and also render the millions of men who suffer from them invisible. Those decisions devalue our lives, in impact if not intent.

A part of what has allowed this to happen is that we as a community are often disconnected and demobilized, struggling just to find a treatment that will help, and divided by diagnosis into parallel conversations. Yet, we share experiences, of sexism, of discrimination, of having to fight for disability benefits or basic accommodations at work or at school. The same failures in science and medicine impact all of us. And some of our diseases are connected by science, whether by common genetics, triggers, mechanisms, symptoms or treatments.

And so I think that even as we fight for each of our diseases, we also need to ally and fight for each other.

I don’t yet know what this looks like. I am already fighting a multi-front war as it is, coping with my health, the specific needs of my disease community – people living with myalgic encephalomyelitis (ME), who are still facing routine denial of disability benefits, homelessness, forced psychiatric institutionalization, child removal, and various forms of coercion to try CBT/GET, all because for decades powerful institutions – of media, medicine, and science – have been telling the wrong story about us.  But I also know that the only way we are going to garner the massive investment we need – to help people understand the slow-moving, insidious tsunami of immune diseases for what it is – is if we stand together and support one another. And if we organize.

We can no longer afford to be patient.

I would love to talk to you about how we can band together:

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You can watch my entire #MillionsMissing speech below:

Full Transcript:

Hi Los Angeles! I crashed very hard on Monday and I’m sitting up really just for this video. But that’s an improvement. I am so sorry I couldn’t be there today. I really wanted to meet you guys. I had some thoughts I wanted to share, and so even though it’s a little weird to do this by video, I’m going to read my speech, so here we go.

Thank you to everyone who has come out to be seen, even though it will cost you, and to everyone who came out to support us. We are in a fight for our lives. And the only way we are going to win is if we do it, together. Here in Los Angeles and in over 100 cities around the world.

We’ve achieved so much in the last few years, raised so much awareness. And I have told my story so many times. But not today. Today, it’s time to move beyond awareness. Now comes the hard, step by step, hand to hand work of taking action. I wanted to talk first about taking action in Los Angeles. By almost random luck, three of the largest ME organizations in the world: the Open Medicine Foundation, Solve ME/CFS and MEAction are all based in the LA area. #MillionsMissing is not just a single day of global action. It is a call to work together and organize in our local communities throughout the year. So let’s keep gathering, let’s keep coming together and see what we can do to turn Los Angeles into a city of excellence – forget center of excellence – a “City of Excellence” when it comes to the diagnosis and treatment of this disease. Over the next several years, let’s go and talk to every nursing school, medical school, go to every hospital, every public clinic and get new clinicians and researchers interested in this disease. Let’s end the crisis of misdiagnosis and underdiagnosis. Let’s go and find the African American people, the Latino people, the Asian people, the indigenous people, the Muslim people that are not a part of our online conversation, that are not getting any care, that are missing from our community. Let’s fight for schooling accommodations and work accommodations and safe housing and the disability benefits we have already earned but are denied so many of us because of the stigma and ignorance. Let’s talk to every local politician, visit all 18 LA congressional home offices. Let’s end the epidemic of homelessness and suicide.

We will need to do this because parity is not enough. So many chronic illnesses that are funded, that are no longer stigmatized – we still don’t understand their causes, we still don’t have effective treatments, let alone cures. If we are truly going to build a world where everyone with ME gets diagnosed and has access to effective treatments, we are going to need to set our sights higher. We’ll need to shake up medicine and science itself.

Let’s link arms with the women’s movement, the disability rights movement, and with all people with chronic illness fighting for recognition and access to care, especially those with: Ehlers-Danlos syndrome, POTS, dysautonomia, endometriosis, mast cell activation disorder, multiple chemical sensitivity, chronic Lyme disease, fibromyalgia. We know we are cousins or at least, doppelgängers, and we don’t yet know why but we have to find out.

We will liberate ourselves and build the world that we need for our disease, but let’s never forget the fundamentals that have shaped what people with ME have had to face – the stigma of disability, sexism, and what is broken in the way medicine diagnoses, treats, and listens to patients.

And now, I want to talk to Washington. Francis Collins, you have the power to help end this criss and return millions of people around the world to their lives. You said “good science takes time.” I don’t have time. I am young now. I am alive now. And every day that you do nothing, I am losing my life. We have already lost so many people, to suicide, to neglect, to the severest forms of the disease. And we have already lost decades. The time to act is NOW. Half-measures, small steps, tokens, gestures, these are the same as inaction and we will not accept them. We will accept only what we need and deserve – massive investment and a plan, a real plan for what you are going to do to help cure ME.

I so wish I could be there today, and I hope I can be there next year. Thank you so much, and I hope we can all get together again soon.

Lead photo courtesy of Paul Vonasek.

Originally published: May 18, 2018
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