I’ve been asked to write a guest blog for a friend’s website. The only brief was to express myself. After stewing over it for a few days I called my mother to talk out it out with her. She suggested I write about being a 22 year old and dealing with chronic illness. It’s funny, I often suspect my health issues affect my Mum on a much deeper level than they affect me. It’s not actually very funny really. Sure, I’m the one that physically feels the symptoms but that has become a part of my everyday life. She has to hear my stories of pain and embarrassment and depression and there’s nothing she can do to help but be supportive. Which she is, incredibly so.
I was diagnosed with Coeliac Disease (CD) in January 2017 and Endometriosis just ten months later. After a long year of being very unwell, it was honestly a relief to finally know that it wasn’t “just my anxiety” as had been suggested to me many times before.
Coeliac Disease is an autoimmune disorder in which the body cannot process gluten. Gluten is a protein found in wheat, rye, barley, oats and malt and when consumed by a person with CD, will seriously damage the small intestine. Endometriosis is a condition where the tissue that normally lines the uterus, grows outside of it. All this to say, my tummy hurt a lot, I was malnourished and utterly exhausted.
After my first endoscopy, I woke up in an anaesthetic haze to my specialist sitting by my bed telling me I had Coeliac Disease. I didn’t feel anything - I figured I could live without bread; it wasn’t a biggie. Mum picked me up from the hospital and we stopped on the way home to find some lunch. I remember so clearly doing lap after lap of the food court at Indooroopilly shops and not being able to find anything gluten free, and Mum saying “this is really going to change your life.”
I suspect I’d had both diseases for a few years, but it wasn’t until a particularly traumatic episode in New Farm in June 2016 that I realised something was wrong. I was hungover and a little bit stoned. It was Saturday morning and some friends and I were walking down to the markets. Suddenly I felt incredibly nauseous and couldn’t think or speak clearly. My friend Ash ducked into a store to buy me a cool drink but when she came out I had crawled into someone’s front lawn, vomited and was almost passed out next to my own mess. She laughed, she told me later she thought I was just really hungover. She ordered me an Uber and I remember her telling the driver that I felt unwell and that I may need him to stop for me to puke.
As we drove away, I slunk down in the back seat. My stomach was hurting. Throbbing. Like the worst period pain imaginable. The pain started in my pelvis and spread down the front of my thighs and all the way up my back. I felt my eyes closing. I did everything I could to keep them open, but my body was shutting down.
No one tells you when you’re supposed to call an ambulance. I was sure I was dying. I somehow got out the words “I’m sorry, I think you need to call an ambulance”. My driver, bless him, pulled over right away and as he made the call I crawled out of the car and onto the footpath. Looking back now, I’m not entirely sure why I thought that was a good idea, but my brain wasn’t working properly. My thoughts weren’t connecting. I lay on the ground doubled over and crying for what felt like forever. People were stopping to ask if I was okay. I called my Mum and tried to tell her what was happening, but I wasn’t making any sense. A stranger, a man, kneeled down next me and tried to tell me to hang up - “leave your mum be, you’ll freak her out”. I told him to fuck off (something I wouldn’t normally ever do, but hey dude if I’m dying I’m going to want to talk to my Mum first). He sat by me and calmly told me it was clearly my appendix and the surgery would be over quickly. I still feel mad thinking about him.
I passed the phone to my Uber driver and he told my mother what was happening. Mum lived an hour away, so she called my Dad who was closer and asked him to meet me at the hospital.
When the ambulance arrived, they thought I must have been in labor, I laughed and told them that was absolutely not possible. I thought it was important that I told them I was high. I hadn’t smoked for a few hours, but I felt like this was the time to be honest. As soon as the words left my lips they dropped what they were doing.
“We can’t help you then.”
I went into panic. I’m dying! Something is seriously wrong with my body and you’re not going to help me because I’ve smoked weed?! I begged them to take me to the hospital. I needed to be looked after. I thought about getting dropped off at home by the Uber driver and my chest tightened. I didn’t think I would make it the night.
I spent 13 hours in the Emergency ward at the Royal Brisbane Hospital. They did a pee test and took my blood. They sent me home eventually and told me this was all probably a reaction to my “big night out”. I hadn’t even been partying! I’d had wine at dinner! I felt embarrassed and angry.
After that day, the pain only got worse. I was hardly going to work because I couldn’t get out of bed. I started drinking coffee where I would drink water but was still falling asleep at my desk. I started to get a tremor in my legs and hands. My shit was black and bloody. It went on like this for six months. I’d complain to Mum all the time but resisted going to the doctor. I thought they’d laugh at me, call me a hypochondriac.
I was trying to go to sleep one night but the little voice in my head was keeping me awake, pestering me into acknowledging what my body had been trying to tell me for a long time. I needed help. I booked in to see the doctor the very next morning. I told her all my symptoms and she seemed calm. I felt a panic attack coming along, which she must have sensed. She looked at me carefully and said “are you worried?”
I started to cry. The relief of someone taking me seriously was overwhelming. Yes. I am.
She started rattling off all the possibilities. The only two I heard were “Cancer” and “Coeliac Disease”. I got my bloods done and waited. I got the call a few days later and she told me that my Coeliac antibody levels were literally off the chart. She’d never seen results like mine before.
The only way to confirm a diagnosis though is to have a biopsy done of your villi which are the little finger looking things covering your intestines that catch the nutrients. If someone with Coeliac Disease eats gluten, the villi are flattened and therefore no nutrients can be absorbed by the body.
My villi were non-existent.
Mum was right. The diagnosis did change my life, and for a good year I really thought it would never be the same again. I found a dietician who taught me how to feed myself. She would look at my bloodwork and work out what I was lacking in (everything) and write up meal plans to help me use food as medicine. I learnt so much from her about how important it is to listen to your body. I also learnt that 90% of your body's serotonin forms in your gut and so if your gut is not healthy, your brain won’t have the right amount of serotonin. This explains my long bouts with anxiety and depression.
After a few months with my dietician, and of recording my symptoms, it became clear that something else may be going on. I was on a low FODMAP, vegan and gluten free diet and taking more vitamins a day than I ever thought possible, yet some symptoms just weren’t going away. My skin had broken out horrifically and I was still having stomach pains.
Suspecting hormonal issues, my GP referred me to my first Gynaecologist who referred me to have a laparoscopy done urgently. A laparoscopy is a key-hole surgery, which takes two weeks to recover from, and is the only way to confirm a diagnosis of Endometriosis. I was hesitant to take so much time off from work for what I still suspected may just be me over-reacting. Nonetheless, I coughed up a grand of my savings and my precious sick leave and had the surgery.
Thank the universe I did. They found and removed Endometriosis all along my uterus. Recovery was long and painful, but it felt good to know what had been causing the pain. My skin cleared up almost immediately. I’d always had trouble with painful sex and my gyno explained to me that this was because of where the Endo tissue had grown. She excitedly told me to get laid as soon as I had healed.
I’m good now. It’s been almost a year since my last surgery. I haven’t needed to see a specialist in about as long. I had an IUD Mirena inserted by my gyno at the start of the year to stop my periods, which should keep the Endo away. I’ve learnt how to cook, and I’ve finally found the confidence to speak to waiters and chefs about how they’re cooking their food and what exactly they’re putting in it. With Coeliac, a single crumb of gluten can damage my villi, so I have to be very careful. I’m not perfect; sometimes I get lazy. There are times where I’ve ordered fries knowing full well that they are probably fried in the same vat as the crumbed chicken. Willfull ignorance. It’s incredibly foolish of me, I know that. I’m learning. I’m still not sure if that first time I went to hospital was because of Endo or CD and I probably never will know. This what my body does. This is my life now. I’m okay.
