People can sometimes find it difficult to know how to act or what to say around brain injury survivors, and may unknowingly cause offence.
1) I know exactly how you feel, I get tired too
Chronic fatigue is completely different to tiredness.
2) You are such an inspiration - I couldn't go through what you have
It's not like I had a choice, someone didn't just say to me one day, “would you be interested in contracting meningitis?”
3) You stay there, I'll do it
I didn't survive and fight over the last seven years, gaining back my independence just for someone to take that freedom from me.
4) You're doing so well considering what you've been through
I just find this extremely patronising.
5) You shouldn't be doing so much, you need to rest
I live with this day in, day out. I'm quite aware of my limitations and signs of my symptoms worsening.
6) We didn't ask you because we didn't think you'd be interested.
I get excluded from social activities quite a lot because people just assume I am unable to participate or would struggle to cope, therefore not asking me is saving me embarrassment. In fact it's the complete opposite, I feel as though I'm viewed as a burden because it's 'too much hassle' to include me.
Keeley also highlighted how some people, particularly shop staff talk over her to the person she is with. She explained: “People ask questions to whoever I am with, for them to answer on my behalf – as if I am completely unable to communicate!
“They will sometimes also talk to me extremely slowly and over pronounce words, assuming that I struggle to understand what they are saying. This ignorance really irritates me.”
Hopefully Keeley’s words have given you an insight into what it’s like living with ABI, and may even help you to choose your words and actions more wisely - making people feel valued and understood, rather than patronised and like they are a burden.