Today on the blog, I have a guest post from my friend Joanne Reeves-Baker for Endometriosis Awareness month. Joanne was diagnosed at 18 with endometriosis, she has battled pain, fatigue, ignorance and feeling suicidal over the last two decades and now mentors young sufferers on how to adapt their life to feel like they can still really live.
I found her blog eye opening and moving not really realising what endometriosis means fully myself. I hope that you do too.
“I wish I had cancer, then they would understand,” she said.
By Joanne Reeves-Baker
March is Endometriosis Awareness month and if you know someone who suffers from endometriosis, this blog is for you. This gives you a glimpse of how they’re feeling and what you can do to support them.
Take a moment to imagine the despair someone would have to feel in order to utter the words: “I wish I had cancer”. It’s a difficult thing to hear, some may think it insulting or flippant, especially if you have lost anyone to cancer. For endo sufferers, having cancer would make it easier for friends, family, colleagues to understand.
The phrase “I wish I had cancer” is uttered by many sufferers of endometriosis and you can see this for yourself on Pinterest. Unlike many cancers though, the treatments offered for endo sufferers are mostly guess work in the hope it may get better, cut things out of your diet, put extra stuff in your diet, get pregnant (yes – get pregnant was a course of action I was advised to take in my late teens!), or severe, invasive, life-changing surgery. For endo sufferers, wishing they had cancer is often coupled with “I wish I was dead”, as for many of us, that is the only release from the pain and suffering we can see.
Medically speaking there are many similarities between Cancer, Multiple Sclerosis and Endometriosis. They all share the same external symptoms that include chronic pain, and chronic fatigue. They are all caused by the cells in the body behaving differently to normal cells. There is no cure.
Whilst I myself have never wished I had cancer, I have on many occasions wished for the end. I remember a time many, many years ago, I was perhaps 2 years post-surgery and had been in denial that the endometriosis was back. I got very upset, and very tearful and confessed to a friend that I was afraid it was back. He tried to be comforting and said to me “well is it terminal?”
“No” I replied.
“Well there you are then”.
This was supposed to be comforting, and although this condition is not ‘terminal’ in the same way cancer can be, it is a life sentence.
Back then; I couldn’t express what the silent voice inside was shouting “NO IT’S NOT TERMINAL, BUT WHEN THE PAIN GETS SO UNBEARABLE I WANT TO KILL MYSELF!”.
That is how bad the pain gets with this disorder.
I’ve had surgeons say (and other endo sufferers have shared similar experiences) that pain killers don’t work for endometriosis because the pain is as bad as cancer pain.
Yet it is not ‘terminal’, this should be a good thing.
It is often the opposite.
Imagine suffering in pain since you were 14, now imagine that pain is 10x worse than anything you have ever felt before. Now imagine that pain is 20x worse than anything you have every felt before.
Now imagine how exhausted you are when (or if) the pain eventually stops.
Now what would your life look like if you had that pain every month, regular as clock work? What would you do if you lost 1 day, 2 days, 5 days out of your life every month, being unable to move from pain?
Endometriosis: there is no cure and the pain killers don’t work. And you are going to be living like this for the next 40 years.
All too often friends and family dismiss your situation and say, ‘it’s only period pain, just grab a hot water bottle’. I hope now you begin to realise endo pain is so much worse than period pain.
The purpose of Endometriosis Awareness month is to bring thoughts like this out into the open and shine some validity on them.
I’ve been mentoring women who suffer from endometriosis for five years now, and there are several reoccurring themes. Family members or friends simply ignore, or don’t understand the depth of pain that endometriosis brings. For the endo sufferer this is how they feel:
It’s not easy to ask for support in this modern age.
I have to be independent.
I must stand on my own two feet.
I mustn’t grumble/keep a stiff upper lip.
Keep quiet about all things gynaecological.
Support from friends and family is vital to keep us away from the dark thoughts I mentioned earlier. Here is the brutal truth: you can’t do anything about the pain, no matter how much you want to gather it up, stuff it into a canon and launch it to space. Here’s a few things you can do:
- Share this blog so others can begin to empathise with the pain of the condition.
- Small things mean so much, please pop round to your endo friend and run the vacuum cleaner round (even if they are in too much pain to even notice you’re there, they will appreciate it so much!), prepare a meal (it doesn’t matter what it is but we should eat and sometimes we want to stay still as moving only triggers the pain again).
- Have a girls’ night in instead of going out. The recovery time from a few days of pain can take weeks and we don’t have the energy to go out, but we still want to get dressed up, put on make-up and have a glass (or two) of wine.
- The easiest thing you can all do: send a random text to make us smile. It doesn’t have to say much, even just a smiley face, to let us know that we’re never alone and never forgotten.
If you know an endo suffer, send a text to them now, say hi and let me them know if they need any help (and be specific, not just ‘do you need anything’ as they may say no due to being independent or not wanting to inconvenience anyone, say something like ‘I love taking the vacuum cleaner for a walk, can I walk yours for you?’ Or ‘next time you’re having an endo day let me know and I’ll pop round and whip up my soon-to-be-famous [insert your signature dish here!])’. Just these small gestures will mean so much.
Now I’m aware that many endo-sisters are in a state of denial, they make like to think, that they don’t need help. The more they do on their own, the quicker feelings of overwhelm and despair will come.
The words that made a difference to me were “I hate seeing you in pain, but I can’t do anything about that, I am utterly helpless. But I can do this for you. Please let me.”
If your endo friend isn’t currently part of a support group, there are many groups on facebook and twitter so they never feel alone. My favourite one is Endometrisos Hope.
My one on one mentoring group is available at 50% for anyone who comes through this blog as part of Endometriosis Awareness Month. Click here to become an Endo-Goddess.
About the author:
Joanne is a modern hippy and a feminist who loves running barefoot as much as she loves her red lipstick. She has been a passionate healer for feminine wounds for nearly two decades and promotes womens’ wellness with the fire born of a feminist.
You can contact Joanne through her website www.joannereevesbaker.com.