Tuesday, 28 April 2015

Endometriosis - The Invisible Illness

I recently found myself in a situation that really made me think. I pointed this out to my Mother, who was with me at the time and since then it has played on both of our minds.

Here's the scenario...

I had received free tickets from a television audience company to attend a recording of a new Sky TV talent show. Whilst waiting in the foyer, members of the audience brought chairs out from the nearby bar themselves, to sit down. Quite quickly, the audience manager approached everyone to advise it was a standing only event and the chairs would have to be removed. Which I had no problem with. Over the other side of the room from me, a woman was on crutches. The members of staff explained again to that side, that it was standing only. The woman on crutches was allowed to keep her chair. Now, I have no issues with a woman on crutches being allowed to sit down.

My point is that I have a chronic illness. Standing for any period of time leaves me in pain. My back, legs and feet hurt so much, I have trouble walking afterwards or remaining in one spot. The pain in my stomach from Endometriosis can leave me crippled over. I was aware it was a standing only event, like everyone else was and accepted that before going. However, at that point in time where this woman was allowed to keep her chair because of a physical ailment, on the outside I looked fine. No one would have guessed with the pain I suffer from.

The difference to the general public between visible and invisible illnesses is so vast. The statement 'but you don't look sick' keeps going around in my mind. It is the fact that physical ailments, illnesses and disabilities get automatic priority over someone who has an invisible illness.

Before the show started recording, the tv audience company then stated they would leave a few chairs out at the back of the room, so that in between recordings, people could sit down as it was going to be a long day. Very accommodating of them and I used these in between breaks and then stood back up when filming restarted. However, in the middle of filming, two chairs were placed in the crowd by the tv company right next to me. An elderly gentleman who had an oxygen mask took one. A pregnant woman was given the other. Again, I was completely bypassed because to them I looked ok. Does having a chronic illness and being in constant 'invisible' pain equate to being of a lesser need than a pregnant woman?

So this has got me thinking. Should people with an illness or disability make their views louder? If in a similar situation, should we point out that an 'invisible' illness can be just as painful, it not more painful, than visible ones? Is it our responsibility to make other people aware of our invisible illness at every event we go to? Or should the companies providing such events, gain a greater understanding of chronic pain? If you have a physical problem, no questions are asked and allowances are made. Is it fair that we have to explain ourselves just because our illnesses are not visible? Do the companies need educating on bringing it up themselves? Should they should ask certain questions such as 'do you need a chair for a medical reason? - whether it be on a short or long term occupancy.

People should not assume you are fine just because you look 'ok'.

What do you think? I would love to hear your views!


  1. Just found your blog. It's funny, I've always been the type to drug up (cataflam is my new bff) and put up. I always feel guilty if I or someone else has to make a concession for my endo. I'm not sure if it's because I'm constantly trying to manage it that I put up thinking any pains will eventually go away. Before I was diagnosed I would set a timer in my head. I always knew the pain would subside, it was just a matter of time. I think awareness does need to be raised, just because it's invisible to the eye doesn't mean it's not there. Apologies for the ramble. I think I was think typing. I would be interested to know that in the situation you described, if you had voiced your illness what the response would have been.

    1. Hi Aams Actually,
      Thanks for reading my blog and taking time out to comment. I really appreciate that. I wish now I had said something to see what the reaction would have been. But similar to you, I too feel guilty when others have to make concessions for my illness. But why should we? We put up with enough pain and lack of awareness as it is. Educating people is really the way forward. We just have to find a voice.

      Many thanks again.

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