Chronic Illness Sufferers: Don’t Call Us Liars

(Lees die Afrikaans hier)

“People only have chronic illnesses because they’re not passionate enough about life.”
This statement is probably one of the the most idiotic and uninformed statements that I’ve heard in a long time. Well, apart from “Have you tried drinking more water?” as if every illness known to man (physical and mental) is caused by dehydration and your DNA plays no role in any of it.

I call this statement idiotic and uninformed for a couple of reasons. One is that there seems to be this assumption that the person suffering from a chronic illness chooses to be ill. At the same time it is also assumed that the person is only lazy and wants to use an illness as an excuse.  And, because the person is lazy, they do not have a passion for life. They take a day’s leave because they’re lazy. That they’re too ill to get out of bed is not taken into account at all.

Not just one definition of “passionate”
But, perhaps, we have also started to give “passion for life” only one specific definition. It means that you always have to be busy. That you have to climb mountains and skydive. That you actually have so much energy you don’t know what to do with it all. That you don’t need assistance from medication to keep your symptoms in check enough that you can get out of bed to go to work or even just have a bath. 
And that is why it looks as if being chronically ill – something that you have no control over – is seen as a weakness. If you don’t have a runny nose or a cough or something of the like, you’re seen as lying or simply seeking attention. You’re not believed when you say that you’re in too much pain to climb stairs or just really need to go and cry in the bathroom for a few minutes because you feel like you can’t carry on.
And this may be the big secret – you don’t see the symptoms because they’re being hidden. You hide them because you don’t want to be seen as weak, lazy or unintelligent – or even dangerous when it comes to mental illness.

We are not liars
What many people who make such statements don’t realise, is that it is about much more than simply implying that someone is lazy. You are calling the person a liar. As simple as that. You are accusing the person that they are only acting as if they are ill and are lying to you every day of their lives. That they’re whole life is an act to seek attention.  
And yet it is these prejudices that cause chronic illness sufferers and those suffering from mental illness to hide their symptoms more and more. Because, when you say how you really feel on that day, you’re asked why you are at work if you’re feeling that ill. But what is so difficult to make others understand is that a “good day” isn’t a day on which you have no symptoms. It simply means that the symptoms are at a level that you can handle. Because you have to learn with time that you have no choice but to handle it.
Prejudices and stigma
How do you move past the stigma and prejudices? Especially in a world where you can not only lose the respect of friends, colleagues and family, but where your work can also come under fire overnight? In a world where, as soon as certain people find out that you suffer from a mental illness they immediately act as if you’ve suddenly morphed into a violent mass murderer. In a world where people, instead of trying to learn more, just keep away and doesn’t want to let their children near you.
Both the easy and difficult answer is to try and educate people about it. People with chronic illnesses – especially those that impact on quality of life – usually do a lot of research about their illnesses. I know, for example, a lot more about the CACNA1 gene than most people. The problem is to find a way to educate people in a way that they will actually make them listen to what you have to say. (Which means that you don’t start off with, ‘so there’s this one gene’…)

Humour… It’s not funny
Apart from the problems around discrimination, humour – as strange as it may sound – is also a big problem. Jokes about illnesses – and especially mental illnesses – are very seldom funny. For the most part it’s people who joke they’re “OCD” because they have to have three sugars in their coffee, or are “bipolar” because they lose their temper very easily. This only shows their ignorance and that they have no idea what the illness is all about. And then they act as if it is an unimportant thing and isn’t really an illness. It’s something for which you just have to drink more water or be less lazy.
I wish that there would come a day when people will really try to find out more about chronic illnesses and will no longer be scared of someone with a mental illness. I wish that there would come a day when you can walk into the workplace and say I have this or that illness and, instead of hearing stupid jokes or being told to drink more water (or stop your medication), colleagues will just silently support you and not blame you for something you have no control over.

Note: This post was written from own experience and that which friends and family have shared about their daily experiences. Thankfully there are also people who are supportive and either have no prejudices or have gotten rid of them. Many times these people make life worth living.

By Carin Marais

Bibliophile, writer of speculative fiction, non-fiction, and maybe-fiction, language practitioner, doer of stuff.

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