What do I tell them?

How do I communicate what is happening to me to people around me?

I try to keep it simple, others are already carrying enough of they ‘own stuff’.

Children: “Mum’s not well, she has a glitch in the software of her brain which comes and goes. The movements and her walking can be a bit scary but they don’t hurt me. This disorder means my muscles behave badly but it won’t kill me, I just have to work out how to control it.I’m a bit of a work-in-progress at the moment.”

Friends: “I have a movement control disorder which means I intermittently can’t move normally. Sometimes I’m OK but other times I shake, tremor and walk like I’m going to fall over. I’m trying to work out how to manage it and move differently in the world.”

Colleagues: “My body-mind is a bit out of whack- a software glitch somewhere but we don’t know where or what to do about it. My brain still works okay, so I’ll just be working in a different way.”

Employer: ” I can’t do the physical job i was employed to do. Any chance that we could work out a way I can work differently and still have an income and help grow your business?”

Centrelink:”I have a neurological disorder which affects my mobility. It’s unpredictable and means that my body is very unreliable physically.”

Neighbours: ” Yes, sometimes I have a wheelchair if we’re going out for the day and sometimes I use walking poles…. I have a moment control disorder”

New people I meet: “You may notice that I twitch and sometimes limp/ drag my leg/look like I’m going to fall over…. It’s a bit strange but we’re trying to work out what’s going on with the neurologists.”

Partner: “Thank you for being so brave and showing me so much patience. It’s frustrating that my body is so unreliable. Let’s see how we can control this and live as normally as possible .”

Myself: Wow! Looks like it could be time for a big spiritual awakening…. hold on for the ride. And just let the strange movements come and go without judging them…if you can”

Have a look at other recommendations of how to communicate this weird disorder



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