I’M NOT OVARY-ACTING

LIVING AND DEALING WITH MY CHRONIC ILLNESS: ENDOMETRIOSIS

You're not well, again?!

Those words sometimes hurt more than my disease itself, which by the way is saying something considering every day my body fights itself until something gives up. 

Yes I'm ill again, and I never stop being ill - that's exactly what it means to be chronically sick. Of course I have days where I won't mention it because the thought of being a burden tears me up from the inside but I promise that every day, even with a smile on my face, I'm still hurting.

The pain is paralysing; as a matter of fact, very few see the real side effects of my illness. Not many have seen the times where I am screaming into a pillow, doubled over in pain, counting down the minutes that feel like hours until the pain passes. The problem is, this isn’t always in the comfort of my own bed. It’s the times where I’ve told you I’m going to use the restaurant bathroom before our food comes out just so that I can lock myself in a cubicle and sit on the floor to ride the episode out, spruce myself up and come back to the table as if nothing out of the ordinary has happened.

When I decline my order on the next round of drinks or get up to go home early, it's not that you bore me or that I'm wanting to ruin the fun, it’s more the fact that I've been sat laughing with you while trying desperately to ignore the stabbing pain in my side or the feeling in the pit of my stomach telling me if the pain doesn't stop my body will revolt by throwing up everything I've eaten until all there is left to come up is dry wretches and old blood (and I’m not sorry for the oversharing). It’s the fact that I know that if I stay out the extra half an hour I will pay for it with exhaustion for the rest of the week. Fatigue that takes over my whole body until I physically have to haul myself around while all my limbs ache as if I have ran three marathons in a row the day before. 

My body fighting with itself isn't the only exhausting part; the random spikes and declines within my hormone levels runs havoc within my brain. It causes insomnia, rise in anxiety levels and brain fog. I’ll forget what I’m talking about half way through our conversation and laugh it off as if I’ve been distracted by something else while internally panicking trying desperately to remember the topic we were on.

I am the epitome of a pensioner living in a young persons body and that is more frustrating than any healthy person will ever know. Knowing your body is capable of so much more than its allowing itself, remembering times when you could dance and run without any implications is often more painful than the idea of the disease itself. It's like constantly not living up to your own expectation and feeling like you're letting everyone around you down while doing so.

The effort it takes to communicate verbally or through facial expressions is often too exhausting leading me to disconnect from conversations or dryly grunt replies knowing full well that can’t be good conversation for anyone, leading me to feel distanced from my family and from my friends. I will purposefully decline invitations to any event which I feel I may have to leave early because of a flare up, which has its own implication on having a healthy and successful social life.

To save my sanity I spend most my life pretending my chronic illness does not exist, yet I spend the other times begging people, including medical professionals, to believe it absolutely does exist. My endometriosis is not a ‘woman’s issue’, it effects every aspect of my life and the people around me lives. It takes an average of seven years to diagnose, there is no cause and there is no cure. There is not one medication out of the tens that I have tried which has been successful for a long period of time. Yet no one speaks about it. My condition has taught me that far too often professionals and our peers solely focus on physical complaints, this does not work when you have a hidden disability. 

It is far too easy to accept the procedures offered to us out of desperation and take the multitudes of pills prescribed to us despite the terrifying and often painful side effects because we feel we have no other choice, there is no other choice for us. For the ones that deal with our condition that’s where it ends, for people like me who suffer with endometriosis the worst part is afterwards where you sit and reflect on what has been, what is now and what lies ahead. 

To set it straight, I am lucky to be able to say I certainly do not lack people in my life who are happy to listen to be complain and explain my illness. The issue is I feel like it is not their problem to fix so why should they be burdened with the details.  This would be the part where I planned to include a paragraph to explain that this article is not written for sympathy but now it is written I feel like that would be a deceitful thing to say. I and the other people I know who share this disease deserve exactly that. We deserve more recognition for the suffering and neglect we face and we deserve to be taken seriously when we explain it and the problems it causes us. One in ten women in the UK are diagnosed with endometriosis which means more than likely multiple of the women in your family and friendship groups are suffering.

There is a long way to go, but with every article read and with every new bit of information being publicised, sufferers of endometriosis get a step closer to being given the opportunity to live a better quality of life. And that is all we want, and all we ask for.