Beneath the Bed sheets

I have just been to see Frida: The Making of an Icon at Tate Modern.

I didn’t do much research before going to the exhibition, and maybe I should have, because I didn’t walk away with what I was looking for.

I went looking for Frida. I found her in places, but not throughout the show. I went to sense her energy and, I guess, also to look for support and inspiration. Not necessarily from her art, but from her soul. Her defiance, her refusal to quit, and her fire to continue creating against all the odds thrown at her.

I’m more familiar with the story of Frida than I am with her art. I don’t know if that’s a good thing or a bad thing, but this is the way I relate to her.

Before going to actively search out her soul today, I had always admired her determination and tenacity throughout the trials she went through.

The reason I went to see ‘her’ today is because I wanted to soak up some of her courage, as in about four weeks’ time I will be embarking on my own journey from beneath my bed sheets.

I will be having laparoscopic surgery to discover and remove endometriosis if it is present. I’m so sick of having to write and think that line: ‘if it is present’.

I’m sure I’ll end up going into it in more depth, as I’m still processing, or perhaps not processing, the situation I find myself in. But scientifically, based on my current medical investigations, I cannot be diagnosed with endometriosis despite my symptoms. Surgery is the next step to look directly for the disease and, if found, remove it.

Some people are ‘lucky’ enough for signs of endometriosis to show up on MRI imaging, so they can receive more information before surgery and their surgeon has a better idea of where disease may be present. But for many women, including women I know and am friends with, it never showed up on their MRI. They were left in the dark, like myself, until waking up from surgery.

It’s strange to find yourself wishing an incurable chronic disease upon yourself. Because that is truly how I feel. I am fantasising about waking up in my hospital bed and being told they found endometriosis.

It would bring me relief to know that I’m not crazy. That my bodily symptoms are caused by something, and that I haven’t simply lost my sense of self and my ability to function for nothing.

But then would come the acceptance that I have this brutal, incurable, life-altering condition that has been dramatically underfunded and under-researched, and that affects roughly one in ten women.

I have been thinking for months about how I would ‘break the news’. Would I make a video on Instagram, posed and perfect in my blue overalls, being very academic, factual and educational? Or would it come through the unveiling of a sculpture?

But after going to try to find Frida today, and now writing this, I’ve realised it is important to me that this current chapter of my life is spoken about with a bit of safety.

I have no idea who, or how many people, come to this section of my website and take the time to read what I have to say. Strangely, that brings me a sense of calm and safety.

These words and thoughts have been here the whole time. It feels important for me to share them, but also to keep them somewhere that feels safe, where perhaps only a few people will see them, until undoubtedly this part of my life becomes more public through the gift and curse of social media.

I write that with humour, because when I eventually share this more publicly, my intention is to raise awareness, which is still so lacking around endometriosis and other gynaecological conditions.

On that note, it feels quite strange to be approaching surgery at a time when a petition calling for gynaecological conditions to be added to the Equality Act has just closed after reaching more than 100,000 signatures, meaning it will be considered for debate in Parliament. It feels like an important moment in a much larger conversation around women’s health.

As horrible as it might be to ‘potentially’ have this disease, I feel lucky to be living at a time when women are increasingly sharing information about their bodies. I personally wouldn’t be where I am now without two very close friends recognising my symptoms and urging me to get them looked at.

Women seek out other women across time, cultures and experience for inspiration and information, just as I did today with Frida at Tate Modern today.