I wrote on Monday about how different ME, and many other chronic illnesses, look from the inside and outside. How those who don’t know what is going on simply can’t tell. So, I want to expand on this with just three reasons why raising awareness is so important.
Reason 1: Because if we don’t tell people, they won’t know.
I have noticed that we have a tendency to not want to believe the worst situation. We want to think that when someone tells us how bad their illness is, that they are over-emphasising it. Why? I suppose that it’s because if they are telling us truth then that situation is too awful to comprehend. I assume that it’s because if we knew how bad something really was, we would also know we would have no choice but to help. But perhaps that’s me not wanting to believe the worst.
It also seems that people want to believe that if someone suffers greatly they suffer because they have brought it on themselves. We may not explicitly believer in ‘karma’, but there is some comfort in the vague idea that if we are bad we get what is bad, and if we are good we get good. When we see something awful happen to someone good, we often rationalise tha they somehow deserved it, or their bad choices lead to it… because if it could happen to them, it could happen to anyone. If it could happen to anyone then it could happen to us.
As I have already mentioned, ME really does look invisible from the outside. When you’re too ill to go out, those outside can’t see the casue, just the result. So when people look on that, just the result, they maybe like to assume that the cause isn’t as bad as it really is. And as long as we let them keep that assumption, they don’t know any better.
If you add to this the tendency in most chronically ill people to hide how ill they really are, people often really cannot see or understand how much an illness effects someone. Actually, when we hide how it really is, we end up obscuring the truth of our situation and making it harder on ourselves.
We need to speak out and say this is how it effects us – the sufferers, the carers, the family & friends – this is how we suffer and survive. If we don’t tell them, they don’t know – but if we do tell them, if we don’t shut up about it, then they have heard the truth.