Living With Invisible Illness

Living With Invisible Illness

The world has been shaken this week by the sad loss of Robin Williams. Battling depression and apparently in the early stages of Parkinsons, he decided he could no longer carry on and took his life.

Unfortunately for many of us these thoughts are not foreign. I’m sure lots of people out there battling their own demons have gotten to the point of ‘I just can’t do this anymore.’ To some of us it is a fleeting thought, for some of us it is a call for help and to some it is a decision, one that that changes lives.
For people who suffer from invisible illnesses the world can be a very lonely place. Whether it be Depression, Fybromyalgia, MS, or one of thousands of other illnesses out there, they are the type of ailments that cannot be seen or understood until you’ve had them. They can last weeks, months or a lifetime and where you can be perfectly healthily one day, the next you can be struck down and never the same again.

Throughout my battles with depression and now ME, I have gone through the typical cycle of grief – shock (initial paralysis at the news), denial (avoiding the inevitable), anger (frustrated outpouring of emotion), bargaining (seeking a way out), depression (realisation of the inevitable), testing (seeking realistic solutions) and acceptance (finding the way forward).

I don’t think I have ever really accepted either illness as I still hold strong to the belief that I will get better. I think I am probably in between the depression and testing stage now. But it has taken me a long, long time to get anywhere near where I am and I still have a long way to go.

Friends and family have been amazing, particularly my mum and my husband, who have rushed to my side and battled on despite their own problems and tiredness to help me and the children get through the bad days. I don’t know where I would be if it wasn’t for them.

However there is still a huge stigma and lack of understanding when it comes to these illnesses. I have seen so many blog posts, images and discussions in the last week, which is great as it means one illness is finally being talked about. But I don’t think there will ever be a day when they are understood. How can they be? No one can understand how hard it is to be constantly tired, in pain or unhappy. I recently read something on that I thought expressed it well:

“Think for a moment about the last time you were really tired at work. It’s harder to focus, harder to function, but you can push through it.

Now think back to the last time you were really sick with something like strep or the flu – too sick to work, and too sick to function. Can you remember how exhausted you were, how hard it was to get out of bed and even take a shower? When you’re sick like that, it’s like your body just shuts down and demands that you rest.

There’s a big difference between the two types of tired, right? That second kind of tired is what people with chronic fatigue syndrome deal with every day. They’re not just sleepy, and they can’t just push through it. They’re so wiped out that their bodies demand rest and sleep constantly.” 

I think this goes a little way to helping people understand what it can feel like to be tired, in pain or low.
But I don’t think I would wish the world to understand these illnesses, as I wouldn’t wish them on anyone. But maybe some acceptance would be better.

It would be nice to live in a world where depression is not something to hide from, to not discuss and to suffer alone. It is something people can be open about, it can be discussed. Where people with ME are not presumed to be lazy or receive comments like ‘I wish I had chance to sleep all day’ – you may like that for one day, but what about every day? A place where people with MS are not a burden on our society.

But in the meantime for all those people out there who are suffering with an illness that is unseen – you are not alone. One in four people suffer from mental illness, 1 in 2 people suffer from a chronic illness – 96% of those being invisible. (source SS Week) Please, talk about your illness, share your stories. So that something as awful as death is not the only time awareness is raised.

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