AROUND FIVE YEARS ago I was diagnosed with endometriosis, after more than a decade of pain.
The main symptoms of the condition – in which the layer of tissue that normally covers the inside of the womb grows outside it – are chronic pain and infertility.
It is estimated that between 2% and 10% of women have endometriosis and that up to half of infertile women have the condition.
Unfortunately for those of us with endometriosis in Ireland, there is often a real struggle to find a doctor who will actually remove our endometriosis lesions and we are left struggling to recover from multiple ineffective surgeries and live with chronic pain.
Many times I find myself saying ‘just keep smiling’ as that is better than crumbling into a crying mess on the ground or shouting from the rooftops about endo belly (bloating caused by the condition – something ironically often mistaken for a pregnancy) and severe pelvic and abdominal pain.
A smile and ‘I’m fine’ are really what the majority of people want when they ask how you are. This response is often hiding more pain than it is imaginable to be functioning with. And sometimes those smiles are trying to hide the overwhelming pain that is infertility.
Here’s an example of a day-to-day conversation I may have: ‘What are you up to this weekend?’ ‘Ah not much, I’ll probable chill on couch in my PJs or meet friends for coffee,’ I reply.
Now the response can go either way but, when it is from someone who has children, it is typically ‘I wish I could just go for a coffee with friends but all that changed with kids’ or ‘Enjoy your free time now as when you have kids there is no free time’.
In the majority of conversations like this, there is never an intent to hurt. A lot of the time you are talking to someone who doesn’t know your fertility struggles but there are also those who do know but just don’t think. Many of us do not think before we speak.
So I guess I am speaking out now to encourage others to think before they speak. As when I am hit with a conversation like the above, my heart breaks into a thousand pieces. I want to scream about how I long to be woken up in the middle of the night by the sound of crying, I want the years of changing nappies, I want the ‘terrible threes’ and the school runs.
I want to tell them how utterly devastated I am to be wearing maternity trousers after promising myself a year beforehand I would not give in until I was buying them for a swelling baby bump. I want to be a mum more than anything, it has been mine and my husband’s dream for over four years – but does that make it acceptable to scream at an unsuspecting colleague or family member? Definitely not.
Again my aim in this is getting others to stop and think – consider what is behind the smiles. The Irish expectation is that you meet someone, get engaged, married, have kid one, have kid two (sure the one would be lonely!). However, we have to consider that the couple together for 10 years with no kids might be longing for a family. And we also need to remember that as many couples do not want children – we need to stop and think about what we can’t see.
The woman in the office having a laugh with a friend might just be hiding pain, physical and emotional – hiding behind the smiles as it is easier than facing the truth. And what we say can be the difference in that person making it through the day with or without tears.
That person smiling and laughing is me. I have so much to be grateful for and am blessed in so many ways but my daily struggle is almost incomprehensible, sometimes even to me. On the days when I am struggling to hide the pain – those days where I fought my demons throughout the night and still got out of bed and went to work – I can’t hide the truth like I normally do.
There are cracks in the act, you are only seeing a margin of what I am feeling. Living with endometriosis and chronic pain, I have become the ‘woman with many faces’. You see the face I want you to see. I am the only one who has seen the darkest of those faces – hiding is easier. But we need to show those closest to us what our reality is as they are what will make the difference in us managing or not.
Appearances can mean very little
The recovery after my third surgery was a long and difficult road. A surprising comfort I discovered during this five-month period was beauty blogs.
It sounds so simple – almost too simple – but, for me, makeup became a survival tool. It also became an essential part of my morning routine as, after my hubby would give me a helping hand out of bed, I would take my pain medication and sit and do my warpaint. It gave me a little bit of time to collect myself, allow the meds to kick in and give me some time to psych myself up to find the strength to make it through the day. It became a mindfulness practice.
I would be semi-transformed into a living being. Gone were the hormonal breakouts and the dark circles you get after night number 10 of barely any sleep. I looked like a normal, functional person. But herein lies the problem with all this warpaint, you look a little too good. Some people may think, ‘She looks too good to be feeling all that pain she says she feels.’
We all need to stop judging people on appearances alone. I myself am no saint in this department, but I know appearances can mean very little. When you are hiding pain or illness you become the greatest of actors and makeup for some of us is an extension of this act. For me, this is not an act for the sake of others – this is an act for me.
The minute I open my eyes, the pain is there. The pain I feel is severe, it is chronic and it is debilitating. It is all over my body. But nine times out of 10 I won’t let you see this pain as, if I do, it means I might actually fully give in to all that I feel and sometimes there is no overcoming that.
Perception needs to change and we need to consider what is going on under the surface. We need to aim for kindness and support, and move away from perceived judgements.
I won’t give up the fight, the battle behind the smiles.
Julie Ronaghan is on the board of the Endometriosis Association of Ireland. The organisation is holding an information day at the Carlton Airport Hotel in Dublin from 9.30am to 5pm tomorrow. To join a confidential Facebook support group, email firstname.lastname@example.org. For more information on the condition, click here.
Column: Endometriosis: ‘It’s the kind of pain that takes the breath from you and makes you fall to your knees’