What the Hell is Wrong With Her?

I finish the email “and I am so very sorry, I hope you will understand” and press send. I feel nauseous with anxiety. Having to explain to another colleague that I will be dropping out of a conference, rearranging a meeting, cancelling a talk at short notice. I’m an academic flake. At least, that’s what people must think who don’t know the truth. I don’t get invited places anymore. I try to avoid making plans.

I’m what is called ‘managing a chronic illness’. My illness is worsening, unpredictable, and agonising. It has taken my life from me, sucked the joy away and left just enough humanity inside for me to see what I could have been, could have had, could have achieved.

A few weeks ago I was at a workshop in Sweden with new colleagues, trying to be collegiate, friendly, laughing through a sweaty fog of tramadol and codeine and the feeling that I’d had a knife plunged into my stomach. I had to walk out. I made a quiet excuse to the person next to me, and took to my hotel bed. I figured it was safer to creep away, than to make a fuss and disgust people with the reality of my condition. I don’t want to humiliate myself further.

I have endometriosis. The same type of cells that grow in my womb grow in other parts of my body, my kidneys, my bowel, my liver, and when I bleed, they bleed into places they shouldn’t and the blood can’t escape. I’m riddled with scar tissue, inside and out. My organs are stuck together with scars called adhesions. I’ve had six surgeries over the past ten years. There will be more. I’ll never be bikini ready.

Pain is subjective, they say. You can’t remember what it is to be in pain, they say. I’ve learned a lot about human endurance in these endometriosis years. I can remember pain. I experience it every day. Pain is brutal and dehumanising. At my worst, beaten to submission by it, all I can do is lay still and take my punishment, reduced to nothing more than nerve endings and suffering. At these moments, death becomes an attractive option.

But this isn’t fit for human consumption in the working world, so it’s really only those close to me who know about it, who see the effect on my daily life. My surgeon said I have no quality of life now. It took for her to write that down in front of me in my medical notes to see it was true.

The world sees someone who spends a lot of time making noises about archaeology on social media, actively involved in a handful of projects, ‘rent-a-gob’ as someone kindly put it, someone who works and tries to have an academic career but fails to be anything but a flake. I showed so much promise. I could have been.

But how can you ‘be’ when you are very ill with a disease that isn’t visible? There’s no quarter for weakness in the academy. No space to rest, to pace yourself, to be unwell and accept it when you need to, and take time out for self-care. It’s a disability for sure, but you can’t plan adaptions at conferences for people who suffer from chronic pain. You can’t predict the unpredictable. The competitive nature of my discipline means I am being left behind.  Only the strong will survive.

 

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One comment on “What the Hell is Wrong With Her?

  1. Very well expressed. I have Crohn’s Disease and am familar with the gnawing pain problem. Even as a volunteer there are expectations of you which I often find hard to fulfil, and social life … what’s one of those?

    Like

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