I will talk about my bowel movements with anyone who’ll listen. Poo is a big part of my life. It is a big part of everyone’s life. We all do it! Using toilet humour and talking about my poo normalises my Crohn’s disease. It helps me accept the fact that I will be living with this disease for the rest of my life. Actually, I had lived with this disease for a few years before I finally went to the doctor and was diagnosed, all because I was too scared to talk about my poo.

It’s difficult to have Crohn’s disease in Australia. The Australian identity says it’s not okay to be sick. Crohn’s disease is typically thought of as a ‘bathroom disease’ and hence not to be discussed, or brought up subtly and over with quickly. I get it, people don’t like talking about bowels. It is literally a shitty topic. But talking about it increases people’s awareness and understanding that Crohn’s disease is so much more than bad bowels. If you don’t know what Crohn’s disease is let me quickly explain: it is a type of Inflammatory Bowel Disease (IBD), not to be confused with Irritable Bowel Syndrome (IBS).

It can involve any part of the digestive system from the mouth to the anus, but most commonly in the intestines and colon. It is believed to be caused by genetic, environmental and immunological factors. A faulty immune system triggers inflammation, and prolonged inflammation damages the gastrointestinal tract, which causes a range of symptoms including: abdominal cramps and pain, diarrhoea or constipation, bloody stools, severe urgency to ‘go’, fever, loss of appetite, weight loss, tiredness and fatigue, anaemia, joint pain, skin conditions, eye inflammation, liver disorders, and osteoporosis. Most of these symptoms are invisible to another person.

In Australia we have this apathetic ‘she’ll be right’ attitude, which is why I suffered for years before seeing a doctor. And as mentioned, I was too scared to talk about it (this is very dangerous; if you are concerned about any health issue, find a GP you can trust). You might think that Australians just have an easy going and laidback attitude, but that’s not true. Australians are hard workers and value people who do their fair share. If someone cannot do their fair share, if they complain or take more breaks then others, then they are assumed to be weak or lazy. Nobody likes working in an understaffed café or construction site, and if you’re that one person who keeps calling in sick then you won’t be afforded any sympathy, especially when it’s an illness that you cannot ‘see’. I worked 3 jobs while completing my undergrad degree and wouldn’t say ‘no’ to a shift. I didn’t want to be considered ‘lazy’. As an Australian, I valued hard work. Now I’ve learned the hard way to value my health, even if facing criticism from others who will never understand how a “tummy ache” can bring you to your knees.

Australians love a cold beer in the summer. They love a glass of red with their steak. They love to celebrate a mate’s birthday with a night on the town or having a ‘few quiet ones’. They will even celebrate ‘knocking off’ by having a drink. Australia has a huge drinking culture; heavy drinking is a cultural norm. Alcohol is extremely difficult for a Crohn’s patient to enjoy; it irritates and worsens symptoms, and some medication affects the body’s ability to process alcohol. Moreover, lack of sleep really knocks me around and can worsen inflammation. So at the age of 25, I don’t drink a lot and can’t stay out late. This can be incredibly depressing and isolating as you are no longer a “typical” 25 year old. You never want to be the boring one! Of course, some drinks are more easily consumed than others, but by no means will I ever be able to drink like my friends. ‘Just one more!’, ‘are you SURE?!’ ‘me too but I’m still drinking’, are just some of the lines I hear from friends if we are out.  No, no, no, no, no. I have to say a thousand times. My friends do understand my condition but can’t reconcile ‘no’ and ‘alcohol’.

Even my Croatian grandfather can’t understand this. He asserts that a shot of his ‘grappa’ everyday will cure me, or strangely, walnut liquor. People love to tell me what to do. I understand people wanting to help, because their cousin’s step-mother’s great uncle’s dog had Crohn’s disease. But it’s important to know that the ways in which a person is affected differs between people and over time. My cousin has Crohn’s, and can’t drink apple and blackcurrant drink without being extremely ill. I can have it without a problem. As I write this, I have received a text from a friend. I am not going to “tea night” with the group tonight; I’m staying in to drink my own tea, because I can’t stand up without my eyes darting around the room, scouting a safe place to vomit if I need to. “Just eat yogurt everyday” he says, “that’s how I got through my disease” (a stomach ulcer). I understand that people will associate this disease with diet. But this disease is not caused by a poor diet. Yes, diet plays a huge role, but it’s not that simple. I love broccolini, I love it so much! But when I am really sick, I cannot go near it. Unfortunately when I’m having a flare-up, the only things that I can bear are English Muffins with Vegemite or McDonald’s chicken nuggets. All the fibre of broccollini will send me straight into unbearable pain.

Of course, somebody will see me eating nuggets and think, sometimes even say out loud, ‘no wonder you’re sick, you’re doing it to yourself’,  or ‘have you considered changing your diet?’. Like being hung over, my diet usually involves imaging food and assessing how my stomach reacts to that thought. I will eat whatever doesn’t make me want to dry retch, and this changes daily. Sometimes I can handle steamed vegetables, unfortunately on other days that will repulse me and all I can handle is bland, dry, carbs.

It’s hard to live with Crohn’s disease. It’s especially hard in a culture that doesn’t want to talk about it and has a limited understanding of what this really is. In a culture that wants you to work harder than you can, to ‘man up’ because it’s just a ‘tummy ache’ or to drink more beer because ‘she’ll be right’, understanding chronic illness is vital. For those of us who can’t drink and party and who try to stay self-motivated and work through a day looking fine, it is a daily internal war. Frankly, it is not easy to “be Australian” with Crohn’s disease.

Carly Gordyn is a PhD candidate at the ANU. She was diagnosed with Crohn’s syndrome in her Honours year.

Photography: Daniel Savage, Fluxability, 2, (2013).