It actually continues to amaze me that the same number of people in the UK that have Type 1 Diabetes have Endometriosis (1 in 10 people), yet it seems to exist as “Oh, I’ve never heard of that, what is it?”. There are so many aspects of life I have to let go of but letting go is simply a consequence of a situation that has been proven to be out of my control.
First and foremost I can’t accept that I have been suffering with Endometriosis for ⅓ of my life, woke up one morning and could never have predicted I would never be the same again. Only in the sixth year I finally got diagnosed with a chronic condition – one that never seems to crop in in a lecture on the pathology of disease.
The diagnosis process was brutal. Bloods after bloods, gaslighting, scans, medical jargon and then to top everything off getting told to become pregnant as a cure. It’s all nonsense! However, my diagnosis journey taught me a lot about Endometriosis: what it is and how it causes the pain, initial types of treatment including hormone treatments, diagnosing it through a laparoscopy, the aftermath of having surgery, how a Mirena coil works, as well as how endometriosis is unexpectedly common, the fact it disproportionately affects South Asian and Black Women and how it has links to symptoms of anxiety and depression.
Nothing will ever cure me – not surgery or a hysterectomy. Thus, I continually grieve over the person I wish I was. I wish I could have freedom to go out to a pub with friends and actually have a couple of drinks with them but I can’t because I’ll have a migraine and be glued to bed. I wish I had independence to go out shopping for an afternoon but of course I can’t because I’ll be cramping so badly on one side I can’t even roll over. I wish I could have continued playing sport but I couldn’t because I had been throwing up for 10 hours everyday. I wish I could just have a normal life. But I recognise now, neither will I have the energy to go out, or it’ll be awkward when everyone else is drinking and I’m not able to so why bother to be scrutinised over something I can’t control?
Sometimes it’s much easier to simply say “I’m fine” rather than to be ashamed to explain the complex truth. The severity of Endometriosis terminated my swimming career and made my last year of school a living hell. I had to constantly run out of classes to throw up and had to sit in the most awkward position in order to dig my phone or hand into my stomach to control the searing pain, but again this is normal behaviour, I’ve even had to do this in aeroplanes and have cried as I was in so much pain but no members of the cabin crew stopped to see if I was okay – again fairly typical. This reinforces that you don’t know the pain of searching for answers for a third of your life just to finally discover that your Stage 2 Endometriosis is incurable and you realise you have no input into how it or your life is managed.
People seem to think a cure comes from performing an hour’s procedure, sometimes fitting a coil, applying a couple of plasters and having one follow up appointment a couple of months later. Now the truth is that pain comes back around 6 months of surgery yet it takes another couple of years to go through surgery again to get that same relief which lasts for a week.
Women like me or worse than me hide it so well because there is no proper treatment available for us. If this was a male condition odds are that we would know all about it and know exactly where to turn. Women have to suck it up and re-design themselves to function with incomprehensible pain – we don’t have the luxury to lie around on the floor and scream all day in agony. Do not ever say to us or anyone who is chronically ill that we don’t look sick or that we look good – because I’ll tell you what hun – we don’t feel it. We have ugly scars from surgery, can have excessive or severe loss of weight, burn marks, internal bleeding or fused organs.
If I’m watching Netflix and having a flare up I think, if I wasn’t chronically ill, I’d probably call an ambulance but instead I continue to watch Netflix. That’s normal. And if we have to stay in bed, let’s just clarify – choosing to stay in bed and being forced to by your own body are 2 different things. Simple answer is that our pain threshold seems to incapacitate others.
Endometriosis is so debilitating and unknown but we would much rather use 500 different words to describe menstruation. Do not ever say to me at least you don’t have cancer because you have absolutely no clue what suffering in perpetuity is like. And let’s get one thing straight, we wouldn’t scream out for support unless there was a valid reason – just like the NHS naming Endometriosis as one of 20 most painful health conditions a woman can live with.
We just do not get the help we need.
We have had to set up our own support groups and learn off of each other. To society, women’s health seems like a distant fantastical memory yet the health inequalities are right in front of us, how blindingly obvious it is that women get sacked from work because they take too much sick pay… yes for a chronic condition that makes you want to tear your reproductive organs out and manipulates us to feel like we’re going mad. Our mental and physical scars are not a sign of weakness, they are a testament to what we have overcome.
This is why I have decided to fundraise for the Chronically Creative project run by Cysters and Juice Droplet. Creative expression has been part of my therapeutic tools to support my own wellbeing following my diagnosis. The donations will be used to paid chronically ill creatives to create a more magazines with a focus on these health conditions.