Meningitis Now Young Ambassador Louise

Don't tell me that!

Louise P 20th December 2017

The most annoying thing someone can say to me is that I’m lucky to be alive. I know that

Don't tell me that

I am painfully aware of how fragile life is and I appreciate, more than most people, how beautiful the world can be. So to be told by somebody who hasn’t gone through what I have that I am lucky to be alive, feels condescending and immediately makes me defensive.

More importantly though it minimises everything that comes afterwards. You can’t compare the ongoing, daily struggle of trying to participate in the world with a brain that doesn’t work properly, to the catastrophic trauma of being ill. 

To somebody who is living with an ABI, emotions are a complicated process, especially about what is happening to them. If they are trying to understand or reconcile their own feelings whether it’s of anger, or isolation, or guilt, or whatever it might be, the worst thing you can do is invalidate them.

“You’re lucky to be alive.” translates to “Whatever you’re going through, it can’t be as bad as being in a coma or needing brain surgery.” 

And of course it isn’t but you know what? My day was probably harder than yours.

When I can’t string a sentence together, or when I can’t look my sister in the eye because it’s too overwhelming and too much information for my brain to deal with, or when I have a migraine so bad that if I move I want to throw up.

And this stuff happens weekly. Most people don’t almost die from meningitis but most people don’t live with acquired brain injuries either.

‘You got good grades though.’

The idea that I must be okay because I’m not failing in education has always been frustrating. I didn’t lose my intellect or my interest in learning when I got ill, but my ability to express or process information has been affected.

Most people don’t see the effort gone to in the name of studying and getting to school every day. They don’t realise that there is a pay-off in terms of fatigue and how well I function at other points in the day, because I prioritise education.

The more focus people put on my grades, the more important they seemed. It almost became that if I did well then my brain injury isn’t affecting me - but of course that isn’t true.

You end up sacrificing more and more in the pursuit of success because the ‘normal’ world has deemed that as a signal that you’re okay, and you believe them. The problem is that ABI is a condition where you need to manage all of the aspects, from your energy levels to stress.

‘You look fine.’

I think this is different when you sustain an ABI from meningitis, because when you tell people that’s what you had, their minds go to other long term effects such as loss of limbs or loss of hearing. To then look at me who has no physical signs that I was ever ill, other than the scar on my head, it seems almost false or an exaggeration to express specific cognitive issues. It goes back to being ‘lucky’.

‘You had this horrific illness and now you’re complaining, but it could have been much worse.’ 

I know that. I also know that my brain is not like most peoples. Nobody can know what is going on inside somebody else’s head. If I tell you there’s a problem, you should listen.

‘Don’t be boring.’ 

People with disabilities want to live the fullest lives possible. The roadblocks of their condition that prevent them from getting out and engaging with the world are more frustrating to that individual than anybody else. I hate not being able to do things that everyone else is doing. I hate it even more if my lack of participation draws attention.

When you have had to learn to manage a condition with cognitive fatigue and mental health aspects through your teenage years, there are a lot of occasions that you simply can’t attend.

You feel each missed event as acutely as the first, because you aren’t living the fullest life and it seems like you’ll always be missing out - living a’ half-life’. To say to somebody that they are “being boring” implies that they are choosing not to join in. Nobody chooses this.

Don’t guilt trip someone into acting against their better judgement and feel like they have something to prove. It will just end with that person so much worse off - functioning even less and making poorer decisions.