Trying...to get better

Guest post by Eleanor Thom

Eleanor Thom came into my life via the internet a few years ago. We slipped into each other’s DMs as she was researching a book about the disease I sadly know all too well but was doing my best to ignore: endometriosis. Patiently she conducted an interview with me while I was preparing for my shift hosting Newsnight. I spilled my guts to her sitting in my glass box office as she asked me insightful questions about how I was really coping - gently forcing me to confront things I tried to push away. Things like how very tired I was; how hard I found it to stand some days for the camera due to the searing leg and stomach cramps and how isolating the experience of chronic pain can be. 

She included some of my story in Private Parts, her essential guide to endo (alongside the mighty endo warrior and literary titan that was Hilary Mantel) and we haven’t really stopped talking since. 

To me Eleanor epitomises the act of trying. I think of this disease we both have, alongside millions of other women, that few understand and even fewer can pronounce, as a thief. It steals days, thoughts, moments and hopes. But somehow she keeps herself ,and those around her, steady, warm and loved. Believe me, I have tested Eleanor on this; ringing her in the pits of pain and somehow, she lifts me up through her enormous strength reserves and the repository of wisdom she has been forced to develop in the iron grip of this cruel disease. 

Eleanor, as well as a gifted comic and raconteur, is a beautiful artist. She paints and knits. Really bloody well. And the matching pink and navy baby blanket and hat she made, while her pain raged, and hand-delivered to me days before the birth of our daughter, remains some of my most treasured possessions. Putting them on our daughter made me feel she was in the presence of a great woman, with a big heart, who has had to dig deeper to simply exist, than anyone should.

I invited Eleanor, who isn’t having a great week pain-wise, (and rarely does at the moment), to pen this piece for the newsletter. I am so happy she managed it - not least because she is also trying, after years of waiting for help on the NHS, to go to America for radical surgery that we all hope might make a significant difference so she can live, not just survive. She cannot work so must fundraise. It is one of the most difficult things in the world to ask people for money. But she is. So may I also ask that if you can, please give. Asking on behalf of someone else, and someone you believe in, is far easier. 

It is a pleasure to introduce you to the ultimate trier…Eleanor Thom:

For as long as I can remember I have been trying to feel better and trying to get my body to understand the assignment. I have stage 4 complex endometriosis and have lived with the pain, treatment side-effects and progressive damage of this disease for the best part of 30 years. 

When I was diagnosed aged 17 I got a word for this thing I’d been suffering debilitating symptoms from since the age of 11, trying to muddle through as best I could. But even with a name for it, my loved ones and I tried to normalise it, mainly because I guess this was my normal but also because there wasn’t ‘a fix’; living with it was all that could be done. It was easier to pretend it was this rather annoying thing I had to live alongside than face the fears; what if it gets worse, means I can’t have children, have to stop working? Catastrophising does nothing and there’s no way to control it anyway, so the strategy became: let’s get to work to work around it. So I just…carried on; went to university, set up comedy group Lady Garden, performed at the Edinburgh Festival, toured the country, appeared on TV, radio, and you know, performed with some of my heroes. 

Joy indeed, but alongside all of this living? I was stop-starting roughly every 18 months for surgeries to curb disease or radical hormone treatments to supposedly slow this disease down. Doctors didn’t know why I had it so bad, why the treatments weren’t working- they didn’t know why endometriosis happens at all- they still don’t. In the 22 years since I was diagnosed our understanding of endometriosis and the treatments hasn’t changed much at all and the diagnosis time in the UK has got even worse- now an average of eight to 10 years. YEARS.  Think of the incredible contributions those with Endo could be making to the world if they weren’t constantly juggling and collapsing with this.

Many have still never even heard of this condition, yet 200 million women and those AFAB (assigned female at birth) worldwide live with it - with 1.6 million of us in the UK alone. Those are the ‘lucky’ ones who eventually got the diagnosis. But then what? Hormones, surgery, hopefully it will become manageable? It’s not good enough, by any stretch. This isn’t just a women’s health issue but a political, social and economic one and until people know there’s a drastic need for change, nothing will. So after years of trying to keep on going in silence, now I talk about it. I share my experience, try to raise awareness and hope my story helps others feel a bit less alone. 

For the last 10 years I have been mostly trying to get my life back. Aged 29 mind-over-matter stopped working and I had to stop performing. I finally had to acknowledge this raging nightmare I’d been pushing down into the bowels of my body (quite literally) and find a new way to live with it. 

One of the hardest things about living with Endo is the relentless quest for it to just quieten down for a bit. The pain, the brain fog, the other weird (and not so wonderful) things it does to your body and head, sometimes for a few days a month, but usually more often, and in my case now- daily.  The need to keep trying things to manage the symptoms is infuriating, time consuming and expensive. In my book Private Parts I call this the endometriosis jigsaw, trying to piece it together what works for you and often with very little support- if any- from the doctors you’d expect it to be from. It’s terribly lonely and frustrating. Sometimes things help for a while or for a long time, sometimes they stop working and off you go again trying to work out what next. When it hits a crisis point or a flare up you feel crazy that you’re back here again, despite doing everything right; taking the medication you didn’t want, having major surgery to get rid of it, changing your life around it- still it comes back. It’s hard not to be depressed or despairing. Suicidal thoughts are by no means rare for sufferers trying to navigate the health system, to keep working, to keep hoping. From the outside you might think it’s impossible to keep on trying, but the answer is: there’s no alternative. 

The capacity people have when they’re sick to have a better life, however tired we may be, never ceases to amaze me. Eventually you make yourself a toolbox of strategies and skills, psychological and practical; a place full of magic things you left here for this rainy day (s); music, baths, meditation, warmth, comfort, tv, podcasts, good food, supplements, pain management, therapy, giving yourself grace. And the most important one - a voice that keeps reminding you; It. Will. Pass. 

In the last few years I have embarked on a journey to really get better which has been no means linear- stalled somewhat by serious Covid infection, long Covid, ovarian torsion and the resurgence of stage 4 endometriosis- back with a vengeance. The sequel part 12 that no one asked for, too fast and furious for any of us to handle. After all the anger and resistance, I realised the only thing I could do was learn to rebuild some kind of very small life, slowly slowly, to get more balance and control over it all. 

Living with endometriosis and chronic pain requires you to develop and constantly hone a certain level of acceptance that the answers aren’t going to get clearer any time soon, that there is unlikely to be a solution as such. I didn’t like being told there were limitations, that stuff wasn’t possible or just simply ‘no’. It all felt so defeated and frankly misogynist. I was brought up to be suspicious of people saying women couldn’t do things. But I’ve also learnt that fighting it doesn’t won’t work either and this negative approach takes its toll too.  

My relationship with endometriosis has been more passive than I’d like to admit. Because I’ve tried everything, asked everyone- hell I wrote a book about it! In order to compute the damage to my life and my inability to do much about it, I think I entered a sort of exhausted state of acceptance and dark humour that went something like this: “Oh of course they didn’t do the scan properly and now my ovary is wrecked- gosh no wonder I felt ill!” Hahaha.  

But then I was put on morphine at home and on a NHS waiting list that never ends for surgery number 12.

And then I got a bit cross. 

And then I spoke to Iris; one of a hand full of doctors in the world who specialises in robotic, deep-excision surgery based in the USA who thinks she can get my pain down to 30% and remove the endometriotic lesions once and for all. No one has ever been able to offer such a hopeful outcome before. It’s a radical surgery, with huge costs (in every sense), there are risks and it’s not a ‘cure’. 

But I’m actively saying I want to try to do endometriosis differently- I want another way to live. For the first time in a long time, I’m trying to let myself have dreams again, and although they look very different from what I hoped for I wonder how amazing it could be if I don’t have live every day in the tight grip of illness.  

Endometriosis has cost me my fertility, relationships, income, jobs and so many, many days. But I try to find hope and purpose so it’s not such a miserable story- because, well, tears of a clown and all that. And when I get my body back a bit more I’m going to harness my fury at the lost potential of so many and drive it towards real and lasting change for the next generation.

What I’ve learnt in the last week when sharing the latest chapter of my life and quite how bad it’s really got, is that if you try to let yourself be vulnerable and ask for help, the kindness of strangers more than meets your wildest dreams, and that’s really something.

To find out more about Eleanor and her quest for surgery - please click here.