Sunday, 26 July 2015

Day ii174, Invisibility as a Super Power

Endo 365

Quick question: If you could choose one super power what would it be...?

Its about time that I sat down with some sloe gin and divulged some stories and some thought processes that I have had over the last few months... I am sorry that I have not been disciplined in writing, between end of year exams and spending a month in Uganda, a few things had to take a back bench. And now armed with a laptop that actually has spell check, I, the dyslexic typer, and you, the bewildered reader, have hope that this experience may go on like the happy marriage they always has been.

If you have read one of my blogs before (your poor, but loyal soul) may know that all blogs have a theme, as even when poised with direction, I tend to tinker off on a tangent. Well, today I thought we could start with an idea that struck me during a post-swim-shower in the chlorine fuelled Manchester Aquatics Centre; Invisibility as a super power (thats what you all answered to the original question right? At least thats what I have done since I was like... five). 

Now time after time when speaking and sharing with fellow sufferers, one thing consistently comes up; the infuriating helplessness that is felt by endometriosis being an invisible disease. Short of scars from operations and being being doubled up in pain, there is absolutely no physical trace of any reason for suffering or upset. When people learn about your story and the burden one carries from this sneaky, silent assassin, quite often they are shocked and comment on how well you look- or in some cases women are not believed about the seriousness of their condition because they 'don't look ill'. Now this is infuriating because when you know that there are times when you are admitted into A&E from chronic labour like pain but you manage it so well that the world doesn't see, some credible recognition when you take the courage to tell your reality would be warmly accepted. However in my experience, 9/10 people that hear your truth will be open minded and ready to listen with sincerity.

So as isolating and frustrating the invisibility of our condition is, ever the sales women, I'm going to put a positive spin on it. And hopefully like me, you may see the beauty in the invisibility.

Back to my story; I have finished my swim and am taking a shower before university. Now these may be the worst showers in the world as they are communal and I'm pretty sure the water has been recycled from the pool. So I'm showering awkwardly with bikini still on, washing away shampoo with chloriney-baby-pissy-water ensuring not to make eye contact with anyone else in there because we are British- a loud mouth eight year old disrupts our peace (there are four of us showering in invisible cocoons) shouting "WHERE IS YOUR LEG?!" It turns out one of the men in the shower had a leg amputated from mid thigh down. Everyone continued with their Englishness and ignored her until she went away. However it struck me about how this gentleman probably feels isolation and frustration but for the opposite reasons that we do; furthermore that we have total control over who we bless with our story and who we do not. The other three in the shower do not know that my insides look like the ending of a horror film or that I had a little morphine patch on my bottom. My truth is under my lock and key, invisibility can be a super power not just a further ailment. 

Rejoice at the fact that you're in the driving seat over one aspect of this condition, enjoy being a freaking superhero and rock the gift that invisibility brings. 

All my love,


1 comment:

  1. Please all fellow endo girls I have set up a petition to take to parliament to try to get funding for research for a cure for Endometriosis and to try to get Endometriosis set up as a disability as at the moment we are treated so unfairly. Please please sign my petition, get your family to sign, friends, share it on Facebook, Twitter blogs as I need 100,000 signatures to get this heard in parliament. Keep strong girls!!!