Living with the invisible

Firstly, thank you to everyone who got in touch off the back of my Metro Online article (still milking the photography as you can see) that was released last month. It largely had a great reaction from readers, both those suffering from M.E/CFS and those who were learning about it for the first time.

I was reflecting on why I found it so helpful to share in a very public way the challenges of the condition and I think it comes down to trying to reverse the feeling of living with an often-invisible condition. Of course, M.E/CFS is not invisible for those who are suffering severely – perhaps bed, wheelchair or house bound. But for those who are more active and still able to carry out some aspects of their ‘normal’ day to day life – it very much can be.

Work colleagues, friends and extended family only tend to see you at your best. For the time you’re with them, whether for a meeting or for dinner you look normal, act as you always have and appear bright and maybe even energetic! You don’t have a bandage to signify a broken leg, or a badge that signals you might need a seat. In reality, it’s only those you live with and/or your partner (if relevant) that see the limitation on your life, the ups and downs, the mental struggle, the relentless nature.

This leads you to question if others understand or believe what you’re going through and respect the boundaries you need to have, which although no one’s fault, can be an isolating. I’ve found it hugely helpful to counter this by being as open about the condition as possible. Of course, writing blogs/articles is a very public way of doing this, but more low-key things such as giving a short presentation to work colleagues to explain the day to day challenges and what you need for recovery has been incredibly helpful. I find I often get stuck in own head thinking that no-one understands, but in reality, through being open I have actually found nearly everyone to be hugely supportive and empathetic.

So, if you’re feeling isolated, and find yourself avoiding situations or activities due to fear of what people think, perhaps opening up to, and educating those around you is worth a shot – you’ll probably be pleasantly surprised and if you’re not, they’re likely not worth your time anyway!

I’m hoping to get a couple of recovery stories from friends uploaded in the coming weeks – sharing how they returned to full health, so keep a look out for that.

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