Living with Chronic Illness

Picture this: you’re waiting in line at the checkout at  the supermarket, the lady in front of you has her arms full of stuff but no basket. Suddenly, one of the many things she’s filled her arms with tumbles to the floor. She turns to you and angrily sighs. With a frown, she slowly crouches down, picks up the thing she’s dropped and stands again, letting out another more dramatic sigh. 

Wow, you think to yourself. What a crabby old bag. 

Then she exasperatedly tips all of her stuff onto the conveyor belt and waits for the dude at the checkout to scan her items. 

“Hi there, how are you?” he asks cheerily as he starts beeping her things through. 

Instead of answering, the lady scowls up at him, tapping her money card impatiently on the machine. 

“Had a good day so far?” he tries again with a smile. 

“No!” she snaps viciously. “It would be a lot better if I could’ve had a basket to carry my stuff in, and now you’re asking me about my day when you can clearly see I’m not having a fun time!”

His eyes widen and he looks taken aback. He flicks you a glance that silently says what was that for?

“I’m sorry to hear that,” he says tentatively and increases the speed at which he’s scanning her items. 

He tells her the price, she punches in her PIN, picks up her groceries and with one last frown, stomps away towards the door. 

“Sheesh what a grumpy bum,” you say to the poor guy as he starts scanning your items through the checkout. 

“I reckon, what’s her problem?” he replies, sourly. 

You have a little conversation with him while he scans your items through checkout, agreeing on the fact that some people just need to lighten up. You part with kind words and happily get on with your day, not giving it much more thought.

What you didn’t know about that grumpy lady was that she was in chronic pain. She had been in that pain for more than five years now and there was no amount of pain relief that seemed to make a difference. She had to quit her job due to too many sick days and hadn’t been able to find another one since because she was “unreliable.” 

She was so exhausted from fighting the pain that her depression was getting worse by the day. That particular day, she’d had enough of lying to people when they asked her how she was doing. She’d been struggling to walk properly through the supermarket and was annoyed that there were no baskets left for her. Her persistent tiredness had made her forget to bring in her own reusable bag, again. She’d piled up as many things in her arms as possible, so she didn’t have to come back tomorrow and then just as she was about to get back to her car to sit down, she’d dropped something. The pain from having to stoop down had shot through her abdomen in electrifying bolts but she’d managed to get back up without wincing. Just as she thought she might have broken down from hiding her pain, that lovely young man at the checkout had the nerve to ask how her day was going, twice! And unfortunately for him, he got the barbed end of her tongue as her emotional patience had failed her. 

That lady is me. 

She is the person I used to be only a few years ago, unable to hold back my acidic remarks from people who seemed to ignore the fact that I was a grump. I was a crabby old hag back then, even my daughter used to say so and she’s the nicest person I’ve ever met.

You see, I have an incurable condition called Endometriosis. It’s a painful disease where endometrial-like tissue (the inner lining of the uterus) grows in odd places in the abdominal cavity, completely uninvited. For me, it has been found on my abdominal walls near my ovaries but mainly on my Pouch of Douglas (google that if you want the nitty gritty details!). This means that sometimes when I sit down it feels as though I’ve just sat on a bolt of electricity which shoots up into my tummy from where my butt hit the seat. It’s probably quite funny to watch, me planting my bum, only to shoot up as if I’ve just sat on a pinecone!

An example of my inner not matching my outer. I didn’t see here what I see today; beauty.

An example of my inner not matching my outer. I didn’t see here what I see today; beauty.

While being diagnosed, I worked as much as I could. Unfortunately, it wasn’t much because the exhaustion of dealing with and hiding my pain was overwhelming. I’m actually qualified in Science. I graduated with a BSc (Tech) in 2010 and it was the proudest moment of my life up until that point. Through all of my pain and self-sabotage, I had achieved something worthwhile. And then the word Endometriosis entered my life and things were never the same. No longer could I pretend I was just tired or had the flu. No longer could I deny the fact that something was wrong inside me and it made me feel disgusting. Working in a research facility or making a difference in the scientific world became a thing of the past and I made really good friends with my pyjamas and various painkillers. 

Finding out that I had an incurable disease was devastating. I just couldn’t get past that word. Incurable. Some days the pain was so bad, and my thoughts were so hateful that I’d wished Endometriosis was terminal. And thoughts like those had made me hate myself even more, because how could I think such a thing? I was damn lucky to be alive! What gave me the right to complain? 

I didn’t feel alive though. I was living a half life without any quality whatsoever and that made me inexplicably resentful of everyone around me. No one could possibly have had it as tough as me and that’s what I convinced myself of every day. 

I found myself stuck in this constantly descending spiral of negativity and hate. You know those “brooding” scribbles that would appear above Snoopy whenever he was grumpy? That’s what I would imagine was in my head, all of the time. Put that with the image of barbed wire threading itself throughout my abdomen and you’ve got a pretty good picture of how I saw myself; angry and damaged.

It’s only now that I’m through the worst of it that I realise that most of my struggles back then came from an awfully misguided mentality. The same old “why me?” bullshit completely dominated me. 

Why was I the one suffering with this illness when I’d already had my fair share as a teenager?

Why was I the one who had this intolerable pain in my abdomen when I was the biggest wimp I knew?

Why me when I already suffer from depression and anxiety? 

Why was I dealt such a lousy hand? 

Surely, I am a good person! Why me?! 

And these thoughts would circle around and around in my head all day. If only I could go back to that angry, hard-done-by person and shake her. “It’s all lies!” I’d tell myself, “None of it has a thread of truth! It’s the depression that’s lying to you!” 

After being diagnosed, my life consisted of denial, anger and then worst of all, self-pity. I look back on photos now and can’t believe how gorgeous I was. I am stunned because I absolutely hated myself. I saw a disgusting person in the mirror who was worth less than nothing. I don’t remember being that pretty and I don’t remember being that nice. Yet my friends and family have always seen me as a kind, hard working person who gives 100% to everything. Was that really me? Even through all the struggle and the self-hate, was I really a good person under it all? 


Making friends with my pyjamas (and the dog).

Making friends with my pyjamas (and the dog).

I know that now because I worked through it. I’m on the other side of two surgeries, too many breakdowns, two children (one biological and one adopted), and the toughest, most enduring relationship a girl could ask for. 

Even so, having my potential career ripped away from me was one of the hardest things I’ve ever had to come to terms with. For years, the word failure was the first thing that entered my head in the morning and the last thing I heard before I went to sleep. Even now, I have to consciously ignore it when it pops up. 

After recently rediscovering my passion for words and writing them, I’ve truly accepted that most of the physical symptoms I used to feel were made worse by my emotional state. I reached out to medical staff countless times for help with my physical symptoms. Doctors would give me some new pain medication to try and leave me to it. I even tried natural therapy which was more expensive and less effective. Regardless of where it came from, the result was always the same; failure. 

One day, I walked into my doctor’s office and said three tough words. 

“I need help.”

Choking back sobs at the thought of yet again another failure, I asked for help with my mental health. 

Those three words kicked off an emotional journey which I’m still on today. I started trying out medications which slowly allowed me to see past the lies and the anger that my depression had fabricated for so many years. Lucky for me, the one we settled on doubles as a neuropathic painkiller so I’m killing two birds with one pill, so to speak. Eventually I felt strong enough to connect with a counsellor and have finally made some permanent changes for the better. 

I lost count of how many times I really tried to change my life and take positive steps forward. Every time it would result in that ugly word failure popping up again and again. But as soon as I said that loaded sentence to my doctor, everything changed. I realised that I was in the driver’s seat of my life, not depression and sure as hell not Endometriosis. 

Nowadays I am writing, doing yoga, eating well and walking outside as much as I can. I fully attribute my breakthroughs to getting my emotional health straight. I will always be a work in progress, and I’m ok with that. 

If you feel like you’re being lied to by depression or anxiety, say those three powerful words to anyone who will listen. Because believe me when I say this: those three words have given me my life back. 

- Jen W