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Living with Endometriosis: Jelly London's Pain Dictionary

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Endometriosis awareness month is usually a month that goes by unnoticed. This year however, things are slightly different for the team at Jelly London who share first hand experience
Living with Endometriosis: Jelly London's Pain Dictionary

Feminine hygiene brand Libresse (or Bodyform for those in the UK) along with AMV BBDO released their #painstories campaign this month. Lifting the lid on endometriosis by sharing visceral artworks, a Pain Dictionary as well as a virtual exhibition displayed in a specially created Pain Museum.

The aim of the campaign is to drive awareness and speed up the 7.5 years on average that it currently takes to diagnose the condition, on account of severe period pain being normalised and a lack of seriousness around the subject.

Jelly London director Em Cooper was asked to create an illustration that would be used as part of the Pain Dictionary.

What few of the team realised at Jelly, that was its very own founder Charlie Sells, struggles with the condition herself. Inspired by the campaign, Charlie shares her own experience of living with the condition…

It’s 2am and I wake up in a panic. I’m so scared to wake the kids and then scare them with my screaming that I lock myself in the toilet and muffle the noise with a towel. I can hardly move; I feel I’m going to pass out. I have often remembered thinking; I hope I’ll be found and someone can call for an ambulance.

I know this sounds like the start of a horror movie, and to be fair, that’s not too far from the truth. But this is just a snippet of my experience of Endometriosis. A debilitating disease that affects one in 10 women.

What is Endometriosis?

In short, it’s cells that are similar to those in the lining of the womb that somehow migrate to other parts of your body, then continue to behave in the same way as they do inside the womb; building up and then breaking down and bleeding as part of our monthly cycle. That’s great and all, but then of course, it can’t exit the body like it usually would! As you can imagine, it isn’t 'normal' for our body to handle/experience this, so it causes inflammation and pain. Without anywhere to go the secretions become a build-up of a sticky tar-like substance within our abdominal cavity, and in some cases, it’s been found as far as the lungs and brain… It is an incredibly nasty, chronic inflammatory condition.

When did I find out?

I was ‘lucky’ to have been diagnosed at 18, which is very quick considering the average diagnosis is eight years.

I remember feeling relieved to be able to label it, however, 22 years later there is still very little research into the disease. This sadly means that unequipped doctors provide the lazy answer of “let’s give them hormones to regulate it” (which then of course just masks the disease and without getting to the route of the problem!). Or they tell you to get pregnant, which probably should be a fairly last-chance option!

Living with Endometriosis whilst running a business

It has then, been a long journey of treatments, operations, pain, tears and Life – a lifetime of missed opportunities and experiences. Those memories of sleepovers, nights out with the /birthdays/weddings/celebrations have been snatched away, with the eyerolls of, “oh, she’s ill again”. Not only adding to my existential guilt of letting people down, but also diminishing my mental health and the concept of what is ‘real’ in terms of pain and my experience of it…

Lack of public information has meant a lack of understanding from others – which has been isolating. Annoying as it is for us ladies to feel that feeling that men don’t know what it is to experience a period, it’s even harder to hear other women say it’s, “just a bad period isn’t it?”. If they can’t relate, how can I ever be understood?

I’ve learnt how to manage my pain quietly, and not to plan things on my worst days. But it’s not always possible to plan; the crippling pain catches you off guard. I’ve never wanted Endo to rule my life and define me, however, it is part of who I am now.

Although this might all seem like negatives, I’ve drawn a lot of positives from it – firstly, realising how resilient and strong I am as a person and secondly, that I am able to push through challenges with determination. These have helped me in my career, especially in starting and running a business.

The logistics are hard sometimes, when I can’t ‘plan’ my bad days. I remember one time having an important client meeting in the office and I had to disappear to the toilet to go and lay down for a few moments, to compose myself before running the meeting. No one knew; however, it takes all your energy to ‘perform’ when you are in that much pain.

I have previously burnt myself out by pushing myself too hard and not listened to my body. Over the years, I’ve learnt to take care of myself more and therefore to not be so hard on myself, if I do need to lie down for a few hours, or take it easy for a couple of days. A large societal problem is that women feel like they can’t be open about their pain and how they can be supported at work.

I am very lucky to have Chris as a boss, as he is understanding of my situation, but my heart goes out to all the women who don’t have a good support system in the workplace. The leading endometriosis charity, Endometriosis UK, is working towards improving this and has built a toolkit to allow businesses to support those with the condition: https://endometriosis-uk.org/endometriosis-friendly-employer-scheme

Having chronic pain is hard to deal with, even more so if you are trying to hide it. I keep it hidden at work; it’s easier that way, because society’s stigmas make it difficult and uncomfortable to explain the condition (and why I am sweating/need to lie down). I can still count the number of times on one hand where I’ve not turned up to work because of it, even when I’ve been in agony (and for reference, I’ve been in labour twice, so I know what agony is!).

The thing that I find particularly hard to deal with is, why should anyone have to hide it and put on a happy face? Those of you that know will relate to how exhausting and depressing it is to keep it all under wraps and project an image of strength – just to get through the day. This needs to be changed, to allow structures to be put in place to support those in need. I want to help to make these changes and encourage the ability to openly talk about being in pain, rather than make excuses.

What has helped?

Research, research, research! Keeping on top of recent studies and the development of new treatments has given me hope; hearing other peoples’ stories has helped me feel less alone. Endometriosis has such a multitude of symptoms that you can get endlessly lost in Dr Google and questioning if that curry last night was the cure or the cause?!?! 

My Mum and sister have been with me from the start of this journey. They have held my hand through the debilitating cramps and the post-laparoscopy diaphragm spasms! My amazing partner Mark has stepped in and stepped up for the last 8 years and counting. I don’t know where I would be without that immediate support. 

Even after all these years I still find myself having doubts about my sanity and whether it’s all in my head, but when I connect with fellow Endo-warriors there is a huge sense of relief – the edge is taken off because I finally feel heard. 

There’s still such stigma and shame attached to periods but Libresse / Bodyform have started to break down those barriers with their womb stories and viva la vulva campaigns. 

I am so proud of being part of the latest #painstories project that our Director Em Cooper illustrated as part of their pain dictionary. This is a fantastic tool to bring awareness to the pain women suffer but to also empower women to be able to describe their pain more accurately to a GP or specialist.

Writing this has been really tough. It’s gone against everything I have trained myself to do for 22 years; Keep quiet and carry on. Its now time to work together, so that no-one has to keep quiet and carry on any more 

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Genres: Illustration

Jelly London, Wed, 17 Mar 2021 11:20:13 GMT