A call to arms for our endo army: We need you!
We find ourselves at the end o' march, which, conveniently, is EndoMarch.
I feel like 'EndoMarch' is a funny name for endo awareness month, because so many of us probably couldn’t muster the energy to march for endo for an hour, let alone a whole month.
Potentially it could have been at the end of the year as 'Decendometriosis' or more on brand might be EndoMay-be I’ll be able to get out of bed today. Or even Jul-why-the-hell-do-I-have-this-insidious-illness?
These are just a few of the many reasons I’m not part of the marketing committee for EndoMarch.
Seriously though, it’s a really nice thing to have an endo awareness month at all.
With one in nine people who menstruate affected by this illness, and countless supporters also impacted, awareness is crucial.
EndoMarch started in 2014. Coinkidincally that’s the same year I was diagnosed after 22 years of misdiagnosis or as my friend, Emma, told me the other day: "diagnonsense”.
So many of us have asked doctors for help and been told our physical pain is depression, anxiety or just period pain, and we've been sent home feeling lost, dismissed and isolated.
I was told I must have just have my 'knickers in a twist' by a surgeon who had just removed my healthy appendix. This is because I’d fainted from pain in a GP’s office and was whisked off to emergency.
So EndoMarch is a long time coming, but it’s here and I’m grateful.
There are too many people with similar stories of diagnonsense and dismissal. But the tide is turning, people are talking and more importantly, people are listening.
Events like those held during EndoMarch are crucial to getting people to understand this is not 'secret uterus business'. This is everybody’s problem.
For patients, endometriosis is an interruption to our quality of life, our goals, and the way we saw our life panning out for us.
Growing up, I wanted to be a gossip columnist for a popular magazine, and I dreamed I’d moonlight as an entertainer on a cruise ship and marry a movie star.
The closest I’ve gotten to that is a wonderful husband who was once in the background of a TV news story about our car being stuck in a carpark; and one time I sailed on the Kangaroo Island ferry.
But it’s not all bad news. I think we certainly shape our lives to include this illness, even if we can’t fully accept it.
After my official diagnosis when I was 36, I co-wrote PPEP Talk, a schools program for endo with the wonderful Pelvic Pain Foundation of Australia. The program is now in schools across Australia.
In 2020, Wakefield Press approached me because I was writing about my experiences with endo and fertility a lot and asked if I might consider writing a book about my experiences.
I said sure, how hard could that be? Spoiler: it’s hard. But I’ve done it and Endo Days the book is coming out very soon! It's not magazine gossip, but there's a couple of salacious stories in there!
I also wrote Endo Days the comedy cabaret, which has had four sold out seasons, and I have met some truly wonderful people on the way. So my performer dreams have come true thanks to this insidious illness.
As endo warriors, we make lemonade from lemons. We embrace the endo and try to build our world around it as best we can.
We join support groups. We do our homework. We ask questions. We spend thousands on appointments and accommodations and medications and apparatus to help us get by.
We campaign. We raise awareness. We educate ourselves and others. We donate to endo charities with the last of our spare change.
And we host our own events.
Over the weekend, I hosted a makers market where people with endo came and sold the stuff they make as a creative outlet to keep themselves employed, busy, relevant, active and, well, keep their dreams alive.
From cupcakes to crystals, artworks to artisan jam, these people with this chronic, incurable illness sold their stuff to other people with this chronic, incurable illness. I bought a lot. And I mean, a lot!
Which brings me to something I want to get on my soap box about: people with endo have an enormous mental load and yet, we show up for endo.
Every month, we have to schedule things around our cycle and our pain flares. We have to think about how work affects our illness and how our illness affects our work.
We think about how our illness affects our friends, family, partners, and others and we try to moderate our behaviour accordingly.
We think about the future and we plan for it and then we change our plans. We think about the past and we try to forgive ourselves for it.
And during EndoMarch, we tell the world what we deal with every day.
We post on socials, we share things with people and we smile and thank all the people who send us the same article about Bindi Irwin or Emma Wiggle having endo, despite having received it around 178 times via messenger, email, text, twitter, tiktok, Instagram and carrier pigeon.
As a side note for my endo friendos, when well-meaning people send me endo articles, I ask them, ‘have you read it? What do you think?’ and then I will ask them to share it with their own networks to educate their friends. Then I thank them for raising awareness for me.
Because our support squad are lovely, enthusiastic and caring but sometimes they see the word 'endo' in the news and then they tag me. Sometimes, they don’t realise they have tagged me in an article I actually wrote.
Because sometimes, they don't read it. They just see the word and think of me. And I love them for thinking of me, but it would be more helpful for our cause if they read and share it because that awareness is what will help close the diagnosis gap, which, on average, is seven years.
Seven years is too long.
Our supporters - our endo army - sharing awareness with their communities will help us to be taken seriously by medical practitioners.
It will help us to be given time and space for treatment and for this illness to have a place at the table rather than being swept under the rug.
We have wonderful supporters and we need them.
This is my appeal to them.
Next EndoMarch or Decendometriosis (I don’t think it’s gonna catch on), this is my call to arms:
Could you please start the conversation for us? Walk with us on our journey to stamp out misdiagnonsense. Help us to hold onto our dreams.
Share the articles about Bindi and Emma with your networks. Plan events with us or for us. Tell that person you work with who takes days off because they are in chronic pain that you hear them. That you believe them. That you see them.
Buy cupcakes, crystals, artwork or artisan jam from people with endo.
You make the world of difference to us and we need you. We appreciate you.
And my endo friendos: you are doing so well. I am proud of you. And even if you can’t get on that cruise ship, the Kangaroo Island ferry is just as good because you got on it and that’s a damned good achievement.
Keep marching - metaphorically of course. Or physically, if you can manage it! Whatever helps! I’m not judging.
Keep supporting people holding events during EndoMarch and keep in touch with your community who have got your back.
This month, I looked around at people with endo working themselves into pain flares and stress meltdowns trying to campaign for their own illness to protect their own futures and it stopped me in my tracks.
Endometriosis affects more than ten per cent of our population worldwide. It is chronic. It is incurable. And it is everybody’s problem.
Everybody deserves quality of life. So let’s join forces and do that together.