Thursday, 12 September 2013

Invisible illness week

This week it is Invisible illness awareness week and I feel as though I should mark it in some way. Just how to do so though has left me wracking my brains. I almost feel duty bound to be shouting it from the rooftops and being out on the streets campaigning but when you actually suffer from an invisible illness it can remain all the more invisible and silent as you do not have the strength to spread awareness so proactively. But what I can do is write this blog and to share my experiences of suffering with as much honesty as possible. In doing so I can help raise awareness in a way that truly portrays what it is like to live with an invisible illness. The more candidly that I write the less invisible this illness can become and more people know about some of the terrible things that some people are suffering that otherwise they would have no clue.

Because it is just that. It's invisible. To an outsider it can seem as though there is nothing wrong. I am not saying that I want sympathy, many sufferers don't. But the world needs to know how many people are living half lives because of so many conditions that are stopping them and that they are powerless to overcome. We may appear lazy and may be labeled benefit scroungers but many people feel the loss everyday of what they have had to give up due to illness. People have given up high powered jobs that they loved. Have seen their relationships and marriages torn apart from the stresses that an invisible illness can put onto a relationship. Felt the financial strain of living on one income or benefits. Or to have dinner cooked and the house cleaned while everyone else is at work and they feel that that is the least you can do to contribute. But it is in no way that we do not want to do it. That we would rather be lounging in our pyjamas watching rubbish television. Because we hate it. We want to contribute. To feel that we are of some value. To feel that we are in some cases a fully fledged grown up.

I've just read a blog post that talked about the usefulness of getting a wheelchair but like me they worried and debated about what this would signify. Is it a sign of giving in? Losing hope? Will it impeed any recovery? As well as all the self conscious anxieties about how people will percieve you and see you as different. Solicit unwanted sympathy. It spoke about how using a wheelchair is a clear symbol that makes your illness 'visible.' People know straight away that you are suffering and may adjust their behaviours accordingly. But in reality it doesn't necessarily mean that you are suffering anymore than you had been. However a wheelchair or mobility scooter or even a walking aid can simply be a tool to help you to gain back some normality. To help you get out and not confined to the house. To do things that were otherwise impossible. But without them if someone saw you stumbling about, needing to be supported the likelihood is they'd percieve you as drunk. Yet someone having a tool like a wheelchair takes away some stigma and invisibility. But for the sufferer it might be the last thing they want. As I said it is a big daunting decision to make. Saying to the world to view you as disabled. When all you really want is just to be able to meet a friend for coffee or go to a shop.

For me in allowing me to get out from time to time it also helps me combat some symptoms of depression and anxiety. Because I have suffered from these conditions in the past and I never wish to suffer from them to that extent again. Unfortunately for these illnesses you can't use a wheelchair or a stick to make it more visible. They can be scarily invisible and lonely and hold so much stigma which can only make these conditions yet more invisible. Making them even harder for sufferers to cope with and to seek help.

In my experience of suffering from depression, anxiety, M.E and Fibro I have discovered though that talking about them can be helpful and cathartic. By listening to or reading about other sufferers stories and experiences it can really be insightful and make you feel less alone. That you are not the only one in a way. As sad as that is. So for me by talking about my condotions and reading other blogs it really is the best way to spread awareness. To show the person behind the illness. Of course a cure would be amazing and more needs to be done to get us much closer to that point and prevent many more people from suffering.

But for everyone with an invisible illness sharing their experiences and making themselves less invisible I have huge respect for. It touches me that I have had so many people have seen my blog. Just to have made one more person aware of what ME is feels like a big achievement. And I am thankful for how it has brought me closer to other sufferers who I can chat to and be fully understood as well as feel more ME than M.E the condition.

No comments:

Post a Comment