(Katie O’Leary has CRPS and is a frequent contributor to the National Pain Report. She posted this on FACEBOOK the other night—and we felt it should be shared. Happily, she agreed)
I’ve come to realize that (mostly) men aren’t just trying to control or fix my illness because they want to help – they just can’t handle being around someone who has an illness. And when reality sets in, they lash out. And blame me.
Many people have done this.
“If you didn’t do this- “
“You realize this isn’t long term right?”
“But why can’t you just live with it?”
That’s my favorite one. When the fear consumes them and they feel guilty for wanting to bail on a friendship or something more, so instead they demand why I can’t change. Why I can’t pretend my leg works in public. Why I can’t just “not” need things?
And usually these people know the bare minimum about treatment and what this disease is. But they want to cut and run so hard because they think a life-long illness is a result of a “bad attitude.” When, treatment is in its infancy, and I challenge anyone to set themselves on fire and not demand water to put it out.
“But the fire will come back!” They say.
“Water is the only thing I can use to put it out. Besides sand and maybe a blanket.” I say.
And when the fire is raging, and they see the invisible illness take hold on my face or in my absences or in my body language – they feel so human and so afraid. Mortality and pain are things people don’t want to deal with. So we find ways to ignore it, avoid it, pretend it’s not there.
I refuse to be around weak men and weak women who use their own fears and their own problems as a lens for their treatment of me and others with this illness.
Because telling me your fears of addiction, while I’m so close to being hospitalized – doesn’t help me. Crying or getting emotional about what scares YOU doesn’t help me or our friendship or relationship.
I used to care so much about keeping other people happy and in my life.
You must start wondering and asking yourself – are they doing that for you? And if they aren’t, if you are just a convenience or someone to use or rage at – end it. Or just don’t care.
I might have this for life, but I want ME for life and not the opinions and judgments of those who only care because of their own agendas.
Life has many gifts. Self-actualization is one of them. Empathy is another. Love is the most important. And when you love someone, you stand by their side and accept the storm is raging but you know it will calm down. Maybe it will still rain – but it’s not forever.
But the right person and people can be.