Happy Spoonie Sunday (slightly later than normal, sorry about that!). Today’s blog is another in our Chronically Creative series, which showcases and explores the relationships that creative Spoonies have between their illness and their art. However, this is an extra special one! To mark the start of Endometriosis Awareness Month, we‘ve got not one but two endo Spoonies together for the very wittily titled No Endo’ Creativity!
We‘ll let Hannah and Mikaela introduce themselves to you personally, but we just want to say a massive thank you to them for such honest and beautifully written posts! There’ll be links to all of their sites and socials at the ends of their respective pieces.
This post isn't the endo’ it either (Can you tell we love that pun?), there’ll be plenty more endo related content throughout the month, so whether you’re a sufferer or someone curious about the condition there’s going to be lots to keep you busy here in a The Village! So, without further ado, it’s on with the show!
Hannah - ladygabe.com
I’m grateful to my chronic illness, endometriosis, for putting me where I am now in life. Strange thing to say, I know, but bear with me here.
I am a self employed published Illustrator and writer, pursuing a creative career that brings me so much joy! I’ve illustrated for Disney, Jaguar Land Rover, Hotel Chocolat amongst many others. However, before I continue with my creative pursuits, I’ve got a little background on what brings me here today.
My Uterus and I were well acquainted quite early on in my teens. I remember the moment I got my first period like it was yesterday.
Getting ready for school, I parked my bottom on the loo and pulled down my white Tammy Girl knickers (when you know you know) to find a little splodge of blood. There it was, womanhood.
‘Muuuuum!’ I screamed from the tiny bathroom, ‘I’m bleeding!’
It was equal parts thrilling and terrifying. Luckily, my dear mother had been very open about the exciting aspects of puberty long before I was to be graced with mother nature’s menstrual miracle.
Of course I knew it would be painful at times, but nothing a good ol’ dose of paracetamol couldn’t cure. I was armed with a bag full of nappy sized pads and the fear I’d wet myself every time I coughed or sneezed. I was good to go to school and step into the next chapter of my life.
It was a privilege after all, to be a woman with a fully functioning uterus. I finally understood Britney Spears’ classic, ‘I’m not a girl, not yet a woman’. I was in that magical in between, how wonderful it was to be alive!
Well, as you’re reading this I’m sure you know that it wasn’t the happily ever after I’d hope for. I’m a spoonie after all!
My uterus and I began to fall out with each other pretty badly 6 months after that first joyful day. Endometriosis and I were not quite formally introduced until my early 20’s, after my first laparoscopic surgery, but the effects of Endo’s existence were painfully obvious in the intervening years.
If you’ve never heard of it before, Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes. Or in my case the bowel, intestines, bladder, kidneys to infinity and beyond! Like Buzz Lightyear, but way cooler.
Over the years I’d find myself unable to move for days at a time, with only a sketchbook and a biro for entertainment. I’d pile the pillows around me to create a fortress of comfort (or as close to comfort you can get with 1,000 tiny ninjas stabbing at your ovaries) - and express my fears and frustrations through the doodles I’d create.
Like many invisible illnesses, you can find yourself feeling quite isolated. You question your sanity - “am I imagining this pain? I was perfectly fine 5 minutes ago!”
Nobody else can experience your pain for you, it is truly indescribable, which is why it is so hard to diagnose and discuss.
I’m now 30 years old, 4 surgeries and multiple cyst ruptures later, my relationship with my uterus is still rather rocky… but my method for escapism has never changed. Creativity with a pinch of satire is my way to express all the frustrations in my mind and my body.
Recently, I’ve taken to expressing myself very literally through digital web-comics all about endometriosis and similar chronic conditions. This new focus for my work came as a result of months of pain and swelling I couldn’t explain - pain my GP insisted was in my mind. After demanding a scan (it took 2 appointments), he relented and they found 2 medium sized cysts causing havoc.
Of course, the only way to react to this is humour. I named them.
Adolf Cystler and Darth Cystious.
The thing is, there’s nothing funny about my condition. It affects 1 in 10 women and trans men across the UK and USA. That’s about 176 million people.
It’s likely to be more than that around the world of course, but it is not easily diagnosed in poorer countries, especially without the means to educate women and teen girls on menstrual health and what constitutes a normal period.
Creative humour is my personal way of dealing with it. As much as I make light of endo and how it affects me, there is nothing light about the burden it puts on the shoulders of those who suffer with it.
Bottom line for endometriosis sufferers is:
● We want to be heard
● We want to be seen
● We want more funding for research into better diagnosis
● We want better education about menstrual health in schools
● We want to stop generations more of us from years of misdiagnosis (7 years in average)
● We quite simply want to be believed
With this new focus, my steely determination and the need to earn extra pennies to buy a sexy new heat pad for my belly, a new book is in the horizon.
Cramping My Style is an interactive journal full of fun facts about endometriosis and closely related conditions. Featuring personal stories from around the world, space to express your own frustrations creatively, a scribble / stabby page to take out your frustration and a diary to log your pain and experiences - to thrust under your doctors nose every time they state it is all in your mind.
It’s a work in progress right now with space for more stories from anyone that has experience with endometriosis, whether that’s first hand experience or as the carer of someone who has it. I’d love to hear from anyone who wants to contribute to the book, or has ideas to expand it and help more people access this type of information.
I’m funding the book myself, with the possibility of a crowdfunding campaign when I’m ready to publish! I feel it is important we have more accessible literature out there, that has the facts we need, along with personal anecdotes to relieve any feeling of isolation. A book that is your go to companion for the doctors waiting room.
My aim as a creative is to use my skills as a means to help others. I know how it feels to be completely alone in the middle of the night thinking your body is failing you, fearing the absolute worst outcome, then the next day having a doctor dismiss you entirely.
My mental health has broken down due to holding back all of the suffering I have endured, all I want to do now is to create something that will help alleviate that kind of anxiety for someone else. Even if all I can do is create silly illustrations to poke fun at this condition, then that’s what I will do!
Mikaela - love.endo
I hated my endometriosis to start with. I felt like the world hated me and I hated the world for that. I thought to myself, “I’m a decent person, why me?” These thoughts were part of my mind for months after my surgery, I cried myself to sleep and questioned my boyfriend for staying with me; why should he be with a woman who only has one ovary left?
I then started getting fed up with myself and the health care system. I was having a hard time seeing the good things in life, I was scared and felt alone, no one was talking about endometriosis around me. And how could they speak about an illness they hadn’t even heard of? Whenever I mentioned the word “endometriosis” people would go “huh?”. So, I started telling people about it and I realised that I loved talking about it since people were genuinely surprised, they hadn’t heard about this very common condition that affects one in ten women. But I felt like my words weren’t enough, I felt like there must be some other way to tell people about endometriosis. The answer to that thought was obvious. I realized that art was one hell of a way to send messages in a fun and inspiring way. I started making “uterus art”, I started drawing vaginas and women with scars on their stomachs, just like mine. People were writing to me and asking me for more art and asking me about endometriosis. I love when people see my art and it makes them smile at the same time as they wonder why all my women have scars or what “endo” means. All these smiles and questions tell me that I am one step closer to making people aware about endometriosis.
Creating art as a way of raising awareness is hands down the coolest thing I have done on my life so far. Having my little art company makes me see the light at the end of the tunnel, I feel like me being in pain is leading to something good. I have days where I just want to cry and never leave my bed because of pain, but I try to remember that tomorrow I’ll probably feel better. The horrible and unfair thing about endometriosis is that some people never or very rarely have days where they feel good and feel like they can accomplish things. That’s why it’s so important to me that I continue spreading awareness since I am one of those people who has good days where I can live a life just like anyone else. I am one of those people that can be the advocate for many people who suffer from endometriosis a lot more severely than me. I hope that my art can make people happy and aware.
Thank you once again to Hannah and Mikaela for their wonderful contributions! We'll be back again next week with more endo content, this time exploring what it's like to actually live with endometriosis from day to day, as well as some of the support available. We hope to see you there!