Endo Blog

You are not your illness
5 mins read |
You are not your illness

Scrolling through Instagram the other day, I saw a post about how illness doesn’t define you as an individual. That part of the battle is the struggle to stay ourselves, in spite of our illness. It made me stop for a moment and consider – how has my endometriosis defined me. Has it changed me?

Just over two years ago I was booked into surgery for the removal of an ovarian cyst that was becoming troublesome. I remember at the time, being defined as a bit of a workaholic, at times struggling to fit in a social life around the pressures of my job. I was a young professional, childless, executive attempting to climb through the ever illusive glass ceiling.

My surgery was on the Thursday and I scheduled in one extra day off from the office for my recovery. In my head, I thought I could rest over the weekend then jump straight back into the swing of things, sans cyst.

How wrong I was.

My surgeon came to check in on me in recovery whilst everything was still a bit of a blur. I was groggy from the anaesthetic, disoriented, sore and shivering. I remember being so confused about the disappearance of time, whilst also weirdly obsessed with the flickering of the smoke alarm on the ceiling above me. He offered me some stronger painkillers and then gave me my diagnosis. The word en-do-me-tri-o-sis was uttered slowly and kindly syllable by syllable, in amongst the flurry of nurses checking tubes connected to my abdomen and the machines beeping and pulsing all around me. It was the first time in 34 years that a doctor had put a name to my pain.

Since then, I’ve had to quit my job and start freelance work. I’ve been through 13 months of a controversial treatment which puts your body into a form of chemical menopause, and I’ve had another 2 surgeries. My endometriosis is the kind that seems to like to hang out on my bladder, around my bowel, all over the outside of my uterus and associated ligaments causing quite some havoc.

At my last surgery, just a couple of months ago, the admitting nurse smiled cheerily and exclaimed “You’ve been here before sweetheart, I remember checking you in last time.” I personally felt like checking in was not quite the right term. I like to check into hotels and overseas flights (remember when they were a thing!) This felt more akin to checking into a very expensive, painful detox program, given my last meal had been over 72 hours ago thanks to the bowel preparation and all that entails.

The familiarity with the nurses, and the process itself certainly helped ease my anxiety. I could find some humour in the fact that prior to calling you into the pre admissions area I was given a buzzer, as if I were waiting to pick up a meal from the pub counter. It was not lost on me that when the buzzer finally went off, I was not in fact, about to be delivered a parma and chips, but rather, go endure more cutting and dicing in the hope to remove this exhausting disease from my insides, a disease which was now making my life rather miserable.

Many of those sitting nearby, also dutifully clinging on to their buzzers waiting their turn, were like me. They were also 1 in 10 – waiting for surgery for their own endometriosis. I knew this because during the wait, to distract ourselves from the bizarrely loud television playing early morning talk shows, we chatted a bit about what we were in for. And when a buzzer started gyrating in someone’s hand, the rest of us would smile and wish our new found friend the best of luck.

There was a sense of comradery, one which was fast tracked by the fact that we were all wearing ill-fitting backless hospital gowns, high waisted paper underpants and knee high compression socks. There was something oddly comforting about this, despite our attire and predicament.

After the hospital stay was all said and done and I was in the midst of recovery for the third time, a familiar struggle began.

What was it going to be like this time. Did the surgery work? Was I fixed? Could I go back to normal? What even was normal anymore?

People often talk about the loss of identity when someone loses there job, goes through a particularly tough time or a relationship breakdown. For me I felt like over time, and through the struggle with my illness, I’ve lost a little bit of myself. I have realised that belonging to the 1 in 10 means potentially having to fight against a silent enemy, forever.

I’m different now. The illness has changed me.

On a practical level, having chronic pain over so many years has changed how I have approached many activities. I’m not great with planning things too far in advance, but by the same token, I like to have solid plans to prepare for. Simple things like leaving the house involves me doing the keys, wallet, phone… painkillers, anti-nausea, heatpack, tampons, water, extra undies check. You know the one?

Psychologically I’m a weirdly apprehensive about feeling better. Especially after this surgery, when things are going comparatively well, I can’t help but feel as if maybe this is just a small break. Perhaps it’s all going to come crashing back down. I’m fearful of having to experience the sensation I explain as akin to being sea sick on a dingy stuck in the middle of the ocean during a storm while some kind of witch-like creature stabs and twists my insides relentlessly. I mean who wouldn’t be? When things were at their worst, if I stood up too quickly from a chair, it could sometimes feel as if my insides were being torn apart. So there is still a bit of residual anxiety around being sat down in the one position for too long.

I also get angry that the treatments for this illness are so extreme and expensive. I am also furious that is still so much misunderstanding surrounding a condition that affects so, so many. Don’t even get me started on the one doctor who told me arrogantly that all I needed to do was to eat more carrots. In his mind a few vegetables would make all my pain and symptoms disappear. I. Can’t. Even.

Despite all of this, there have been some positive changes.

I’m more appreciative of the little things, of being able to achieve what for others may feel like very little tasks. I’ve recently started yoga and in my universe this is big news and I’m not in the least ashamed of that.

I’m also a lot gentler with myself.

I’ve noticed that, over time, I’ve become more willing to talk about my condition, my recovery and what has and hasn’t worked in my experience. I’m open to trying anything but also, I’ve learned that if something doesn’t work I find it better to stop rather than punishing myself on a restrictive diet, exercise routine or therapy that for me isn’t helping.

Those little cells similar to the lining of my uterus have been causing me so much pain and anguish for so many years. Those cells have altered more than my insides. They have taken up an inordinate amount of my energy, my focus, economic resources, tears and feelings particularly over the past few years. They have caused me to withdraw from social events, relationships at times and made me more introspective and anxious. But they haven’t come to define me.

If you are like me, 1 in 10, you might be struggling yourself to navigate through what your illness means for you. I can’t say whether or not it will change you like it did me. But I can say that it is you, sitting in a hospital gown, sharing your stories, or simply existing- battling through in silence, you can bring a sense of calm before the storm. Just knowing that others have gone through this and come out the other side has helped me many times when I’ve been sitting in that bleak ocean of pain on the bathroom floor (or chair).

It can also help the millions of others about to endure it.

I’m looking forward to a cure but until then, all my love. Keep battling on.

Rach xx

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Endometriosis Australia is a nationally accredited charity that endeavours to increase recognition of endometriosis, provide endometriosis education programs, and provide funding for endometriosis research.