What it means to me to live with an invisible illness

You may have seen the term invisible illness on social media, in the press and in many places online but what does it really mean?

I’m 5ft10 on the slim side with good skin, blonde hair and a happy, confident demeanour. I live with my beautiful and amazing wife, we frequently travel on luxury holidays, I am in a senior position in my job and until recently kept up an intense exercise regime. To anyone looking in I am put together, healthy and living a great life. My poker face is second to none and even when I am having a bad day I manage to hold it together. Whilst I am living a great life I also experience daily pain, digestive issues and the constant knowledge of exactly where I am in my monthly cycle.

Endometriosis is still a relatively unheard of condition to anyone who has not got it or knows someone who does, the awareness is increasing but to many people it’s just looked at as someone who has bad periods or even worse not seen at all because its a women’s problem. While I’d love to believe that the stigma is decreasing I still see the cringe in my bosses face when I have to discuss why I have to go to the hospital again or why I need to leave on time because I am feeling particularly terrible.

The invisible illness part comes from the comments such as “but you look great” or “you don’t look ill” it really drives me fucking crazy! I don’t think there is anything quite like being judged on your looks when you uterus feels like its trying to break free from my abdomen. Even with my own family, I go out for dinner with them and when I turn down the bread or ice cream because I am trying to reduce my inflammation and help the pain I still get comments such as “It can’t be that bad you look great”.

So what does it really mean to me living with an invisible illness? it means having to explain in detail symptoms i’m experiencing just to be heard, it means guilt when you hear a tone in someones voice that they aren’t quite convinced you could feel so terrible and it means feeling incredibly alone when i’m in a lot of pain.

I’d love to hear about others who experience the same.. please share!

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