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The Feelings #MeToo Stirs in Me as a Woman With Chronic Illness

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I am an imposter in #MeToo land. I have not been sexually assaulted and I have no right to a voice.

That’s my “shut up” voice. It takes awareness and self-compassion to stop her taking over. But the reason I have a loud self silencer in my head is also the exact reason why I do want to say something. The other messier but free-er bits of me have been stewing up a big load of feelings about #MeToo.

My messy bits feel compassion and community with people who have spoken out with #MeToo and even more with people who haven’t yet or never will. I feel solidarity with the feelings of inadequacy and destructive self-talk: Solidarity with the “who do you think you are”s and the “you think you’ve got it bad?!”s. With the “it hurts so much but it’s nothing really and I shouldn’t moan”s. With the “maybe I did do something to make it happen”s and with the fuming angry but silents. I don’t know anything about sexual assault but I’m highly qualified in being invalidated.

I’ve got ME/CFS. As in myalgic encephalomyelitis/chronic fatigue syndrome or, if you want to belittle me, “yuppie flu,” as I grew up knowing it by. Or, if you want to belittle me even more, “there’s nothing wrong with me at all except that I’m exhibiting ‘sickness behaviors.’” I want to share love from our (by necessity) online community, to women in general wherever they are on the #MeToo spectrum. And to men too.

I don’t have that experience of being scared physically at the hands of another more powerful person. Although, having just written that, that’s exactly what I’ve often felt in front of medics. I have not been sexually abused. But I have felt some of the stuff that I’m guessing is well known to people who have been. I’ve felt unheard, trivialized, blamed. I’ve been labeled as an attention seeker, catastrophizer and drama queen. I’ve felt like a fraud. Told to stop ruining the lives of my loved ones. Been told that I wanted this really at some deep or even not so deep level. Had my confidence knocked right out of my socks and felt like a nobody and a disgusting one at that. Had my body land me in humiliating and compromising positions in public places. Felt like I don’t know my own body and cannot rely on it to protect me. Second guessed every move I made or thought I’ve thunk. Regurgitated my history alone and in public to scrutinize for clues. Had said history regularly rewritten by strangers and not in a good way. My motives constantly questioned and my word counted for nothing.

I’ve soaked up all this stuff and even though I spend almost all my time at home, I’m now fully trained and capable of all the best put downs without any outside help. I alternate between feeling like an illness imposter and feeling like death on about a weekly cycle (it’s a fluctuating condition). I can simultaneously feel unjustified in saying that I’m ill and unable to lift a spoon to my mouth. Quite an achievement; it’s taken years of training.

I also feel like a fighter. Bring it on, I’m angry.

The ME community has people in it who have been bedbound for decades. Who haven’t been as far as their front doors for years and are not well enough to let the world come to them either. Who get weird and wonderful combinations of symptoms with no medical support and little hope of change except for the worse. It’s also got people in it who can get to work, who can get their kids to school. Who can go on holiday and walk on a beach for maybe more than one day at a time before needing recovery days in bed. People who, if they thought it worth the payback, could go out dancing. It’s even got people in it, like me, who get remissions good enough to climb mountains. So we’re a diverse community. I feel intensely jealous of those people who can still be in the world to some extent and guilty, fraudulent and grateful when I think of those who are nearer to a complete hell.

What we all get and possibly the mild end people even more so, is invalidated. And not just in a casual way, but in a to your face, write it in your medical notes and inform your nearest and dearest sort of way. Powerful respected members of society signing official documents to the effect that we are not to be trusted. And because it’s such a big part of the disease (nothing to do with the actual disease to be clear, but because of our cultural and medical attitudes to it), the solidarity between people with the condition that comes from sharing that feeling, bridges the gaps in our physical experiences. I have read far more compassion towards people with mild or moderate ME coming from people with severe ME than coming from healthy people. We get it. That the disbelief and denial of our experience can be as big a deal as the physical symptoms. Which are not insignificant.

We get it, that the denial of our experience comes as often from the “goodies” in our lives as from egotistical small minded medics. That healthy friends and family will, with the best of intentions, struggle to understand and sometimes never will. That we’ll lose loved ones down the gap in perception and end up with much reduced families and friends. That it tears apart our relationships. That sometimes people we love and who love us just do not get it. Even if they want to get it and are still the best person they could possibly be. And hopefully they will someday be able to understand without having to experience the worst of it to get there.

And some healthy people, friends, partners, parents, often children, even medics, do get it. Despite having not been there themselves but just through being respectful and courageous and open-minded and engaged. And they are lifesavers. To have people in the world out there who will speak up for me and listen when I want to talk. I know I wouldn’t be feeling calm and happy despite everything if it weren’t for those people in my life.

I want to jump over my fear of being dismissed or ridiculed for speaking about this stuff and shift this claggy lump of disbelief and denial a tiny little bit.

I don’t want to entrench us as “victims” and “perpetrators.” I want to share my feelings and experience without it being used as ammunition either against me or against the people who have said or done things that deny my experiences.

I want to use my voice and have it heard and understood kindly.

The imbalance between men and women that underlies sexual abuse also underlies the treatment and understanding of diseases that are mostly experienced by women. Most ME patients are women. The history of ME “treatment” is a lesson in the treatment of women. Although for the men who do have ME, this may only make it worse for them. I knew nothing about this history for the years I was undiagnosed and without a supportive community of patients. I just soaked up the denial of my reality. The simple fact that others have experienced the same dismissal of the things their bodies are doing means we can empathize with each other and heal. I don’t think there’s any other way to heal from the psychological trauma of having your reality denied than by kindness and understanding from others. All we then need to heal from is the disease itself. To do that though also means needing us to be accepted and believed as worthy of time and medical research money. To be seen as equal to everyone else. To be able to go to a doctor and expect someone to have at least tried to have developed a treatment that has a chance of working and to expect an empathetic ear.

I feel that I’ve got nothing to give to #MeToo about the actual assaults. Apart from the understanding that it’s something I won’t be able to fully understand without having experienced it. But I think there is a lot of understanding and love that I and the ME community can give to people surviving sexual abuse about the effects of the aftermath. And about the extra assault that gets laid on top of the original one when people are not heard, not believed and shamed into silence.

I would like to jump on the noisy, joyous, angry bandwagon that’ll take us to a better place. My urge to speak what’s true for me is a healthy one and I’m going to say #MeToo.

Originally published: April 10, 2018
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