This is the first blog post I’ve written in a while and I didn’t want it to be an angry one. However it is, because so often the day-to-day situations people with brain injuries find themselves in causes an overwhelming feel of anger.
Today I want to talk about defending ourselves.
Many times we hear things like this:
“You’re using your brain injury as a crutch”
“You’re using your brain injury as an excuse”
“Get over it”
“You don’t look disabled”
“You’re making it up”
Then there’s the personal ones that hurt even more. I’ve been told:
“I wish I could be a kept woman”
– A friend (who I am no longer friends with) threw this into a conversation after we were talking about work and the fact I’ll never be able to work full time. At the time I thought nothing of it but a few hours later at home it struck me just how rude and offensive that comment was. I don’t want to be a ‘kept’ woman, I have struggled with so many jobs in the 5.5 years since my brain injury… The struggles no one sees and the struggles this friend didn’t ask about.
“You’ve been through A LOT worse x”
– I made a joke about how awful getting a smear test is on my personal facebook account and a friend said this. Who are you to decide what my worst thing is? Plus I was on SO much morphine and pain killers during my hospital and recovery time that I don’t remember the pain. I know she was just trying to be nice… We’ll talk more about this later.
“It’s easy!”
– So many times I have been told this. A few times thanks to my no filter brain I have shouted “IT’S EASY FOR YOU!”, people need to understand that things after a brain injury are no longer ‘easy’ in fact ‘easy’ becomes ‘struggle’.
“Everything else sounds like your problem”
– Explaining why someone upset me. They didn’t see that they’d upset me and they didn’t apologise. I think they chose to look past the points I was making and blame it all instead on my brain injury, still to this day I don’t know why.
“Can’t take you anywhere”
– Many times when I’ve made mistakes in public.
“Brain injury isn’t a disability”
– Not been told this but I overheard it from someone sitting on the same table at me at a friend’s birthday party. I wrote a blog post about it a few days later.
I feel like when people say things like this we let them by not defending ourselves but at the same time when we do defend ourselves they think we’re overreacting, they don’t care, they don’t want to know and they don’t understand out point of view. When this happens they get away with upsetting us and we just end up looking like a bitchy person and we also feel worse about ourselves… For me, and I imagine most brain injury survivors it feels like I’m keeping a dirty secret. I feel ashamed of myself and I feel isolated, but this is not the case; We are keeping a proud secret, we have survived death, we have battled through recovery and we are battling everyday just to live life.
I wanted a conclusion for this blog post on how to sort this problem out but I don’t think there is one yet, we just have to keep raising awareness on brain injury and awareness that sometimes it’s best to say nothing to someone who has a brain injury (or any other chronic illness) than saying something just to be nice. It’s not helpful, it’s not making us feel better, it’s not good advice… It’s patronising, frustrating and upsetting to hear. Even more so because we can’t defend ourselves because you’re “Just trying to be nice”.
‘i don’t know what living a balanced life feels like
when i am sad
i don’t cry i pour
when i am happy
i don’t smile i glow
when i am angry
i don’t yell i burn’
– Rupi Kaur
Fellow brain injury survivors: How do you think we can solve this problem? What are some of the things that have been said to you? Comment below, tweet me, message me on facebook or email me: afterbrainsurgery@gmail.com. I will add a new blog post (anonymously) with all the replies.
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“Are you feeling better now?”
No & I won’t ever be ‘better’. Sadly there’s every chance I’ll feel worse. The relentlessness of brain injury combined with aging & frustration wears me down.