Whilst I do have an invisible illness this is not just about me. So many people have an illness we can't see and most of them share the same experiences in their lives. Short lived sympathy, well meant encouragement and disbelief.
I think we have all done it, we've been either sick or healthy ourselves then seen someone who isn't working, perhaps claiming financial support and we're like .... yeah right, looks like they're ill!
No one intends to be mean about it but, we just don't think. I know I have been guilty of it myself and I should know better and, this is why ...
Mum had chronic arthritis. I had many stern comments to say to people on trains who left her standing whilst they sat in the disabled seat but mum was in constant agonising pain every day for the last 20 years or so of her life. I have lived knowing what invisible illness looks like so, yes, I should know better.
One of the things people might say to mum was "Oh yes, tell me about it, I have such pain with my rheumatism, you have no idea"! Now, true, to them it was bad pain but it didn't compare to mum but she always took it graciously.
The truth is, even two people with the same diagnosis can have hugely different symptoms and degrees of severity. It simply isn't right or fair from one sufferer to say to another that they do this or that so if they are copied then someone else will cope too, we are not the same.
Why should we expect our lives should ever change whilst we are young and healthy? Mum died at 52, I am fast approaching 56. We just never know what 'old' is for us, we don't know what cards life is going to deal us until we get them.
It is really upsetting to someone bravely suffering to imply that they might be making it up, they might be lazy or expect the state to support them.
"You're too young to feel like that."
"It's all in your head."
"Everybody gets tired sometimes."
"Your pain isn't real."
"You're cancelling on me again?"
"I'd like to lay in bed all day too but some of us have to work!"
"Well, you don't look sick."
Don't judge that which you do not understand
The worst part is, sometimes the very people who say it have an invisible illness themselves. They might sufferer terrible migraine, anxiety or depression and, to them those things are totally real. It is no good telling your migraine that it is all in your mind and expecting it to go away!
Let's get real, if it really is all in the sufferers head, wouldn't they rather imagine they were wonderfully healthy full of bounce and vigour? Why would someone choose to struggle on a little income if they can choose a good job and big wage packet?
Many women each month go through something quite unpleasant and to the outside world, entirely invisible yet, many may well expect and be given time off work for it and extra understanding from those around them simply by saying "It's my time of the month". Why can these ladies not understand how hurtful it is to tell someone they're making it all up?
Next time you are confronted by someone who tells you they have an illness you don't understand find difficult to accept, give them the benefit of the doubt and believe them. You don't ever have to fully understand it but, one of the greatest comforts is having those closest to us tell us we are believed.
Comments
Thank you for being there for me even when you're almost crying out with pain and exhaustion.