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Living without a diagnosis

Endometriosis

By AuntieEndoPublished 2 years ago 3 min read
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I am living without a diagnosis for Endometriosis. We do love an accidental rhyme. It’s taken me so long to get to this point and they say I’m one of the lucky ones. I knew something was wrong July of 2020, it’s now April 2022 and I’m on the list for diagnostic surgery called a laparoscopy. So yes friends we are moving in the right direction.

I wanted to write this passing thought down because if I don’t end up having endometriosis then I can laugh at this, laugh, laugh, cry and laugh.

Living without a diagnosis has made my head go to dark places, dark like the bottom of your hallway at night dark. Dark like that 100% coca chocolate you just had to try but can’t bring yourself to actually trying.

The doubt is probably the worst, you know the “am I really sick?”, “is this all in my head?”, “does anyone actually believe me?”. It’s the closest I have ever felt to someone with a hidden illness or disability, why does the lack of diagnosis, the lack of a label, lack of visibility mean that it’s not real?

“I believe you, but…” is just like when someone says “no offence, but” or “I’m not racist, but”… to those people just don’t bother opening your mouth. It’s cool, I don’t need another voice telling me what I have or haven’t got, I’ve already got my own.

I’ve got to the point now where I just feel guilty, guilty for wanting it to be endometriosis. I just want an answer, there’s nothing worse than going to a quiz night and there’s a question you thought you knew the answer to and it turns out to be incorrect but instead of giving the right one they just move along. Or when someone just stops midway through a sentence and …

Did I get you? Sorry about that.

Living without a diagnosis means it is hard to justify ‘down days’, by this I mean taking time off work, taking a day on the sofa, cancelling a meal out with a friend or a shopping trip with your mum. Then your inner demon is saying “they think that you’re lazy, they think you are just fobbing them off, they think you just want a day at home”, you know what I want to say to that demon? F- just kidding… if we didn’t have an inner demon we wouldn’t know the worst scenario, we wouldn’t know the worst words you could hear, we wouldn’t know…wait but why is that a good thing? Well peeps that’s because surely that is the worst it is ever going to be. We are our toughest critics after all. The worst words I think I have ever heard have all been inside my head.

Living without a diagnosis is hard, living with debilitating symptoms is harder. A lack of diagnosis is not a lack of symptoms it is just a lack of not knowing what it all means. Take a simple maths problem you can’t get 10 without 8+2. Sure that equation for someone else might be 5+5, 4+6 and god forbid you’re a 9+1! We are human, and we are doing great… most of the time.

Living without a diagnosis is scary, and I’ll tell you why. It could or couldn’t be literally anything. A fear of the unknown is sometimes all it can take for you mind to wonder down worry avenue, what if it’s this, what if it’s that, what if it’s death? I would like to move streets please, worry avenue to cure my disease lane…just need to stop off at diagnosis road on the way for that bed frame?

Living without diagnosis of an incurable disease is like wondering if you have microwaved the popcorn too long. You know it’s gunna be bad but you have to eat it anyway because the movie is about to start and the batteries have gone in the remote. Incurable, a scary enough word itself. Something you are going to have to just deal with quite possibly for the rest of your life. Cool. Where was that moving van stopping again? Incurable lane? That’s not what it said on the map!

I am not qualified to give advice so I’ll just give friendly…words. Give yourself a break.

- Hannah, pain level 6/10 feeling a little headachy

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About the Creator

AuntieEndo

My Everest, chronic pain, life and the works of yours truly Auntie Endo…hello and welcome. Buckle up, sit tight but don’t buckle up to tight, or sit too up because you’re in pain and that’s ok!

Reader insights

Nice work

Very well written. Keep up the good work!

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  1. Heartfelt and relatable

    The story invoked strong personal emotions

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