Long-term illness is an experience I could never fully understand until it happened to me. I’d always had random inexplicable stomach aches as a kid, but then nearly two years ago my body broke. For the three months before I could figure out what it was, I had diarrhoea approximately five times a day almost every day. I was always a bit nauseous, with a bit of pain, and pretty frequently in a lot of pain. Welcome to the magical world of chronic Irritable Bowel Syndrome.
Unfortunately, IBS is not a disease – it’s just a body not functioning too well – so it can’t be cured. Regardless of how strictly I diet, a wave of stress or hormones can have me incapacitated for days. But IBS can be managed.
I saw a whole bunch of doctors who gave me things that made it worse or had no effect, until I saw one who gave me a drug. I had to take it three times a day, and it stopped the pain. It was amazing. It did concern me, however, that it also stopped me from pooping at all. This was clearly not a sustainable solution. At the moment I thought I actually couldn’t take it for much longer, a friend recommended a naturopath. She told me what foods I couldn’t eat (all the fun things) and what I could eat (meat, veg, seeds, leaves). The diet made an almost instant change.
It’s hard for lots of reasons. My food bill almost eats up my entire fortnightly pay – for example, you’d be amazed how expensive the only honey and fruit free muesli on the market will cost. It’s also surprisingly hard to rely on others to keep you alive, due to guilt and self-loathing and whatnot. I should probably also mention the actual symptoms: I’ve felt a little bit sick at some point almost every day for over a year. It’s like your brain is drowned in nausea; all your thoughts are muffled and every action takes more effort. There is a haze between you and others; you can’t speak or joke as well, or produce work the way you used to, and you can see the change even if others can’t. It’s like watching your true potential slip away.
When I’m healthy I feel like my body is a part of me; it can express how I feel and who I am. The sicker I am, the more separated my body and my identity become. On bad days I look down at my body shivering beneath me, pain knifing through my stomach and waves of nausea crashing down, and it feels like my bones are fraying, and I think, Wow. Things are falling apart down there. It’s just kind of funny in that moment. And that’s when I know my body is not so much a part of me, but more of a wall between me and the world.
There’s a weird sort of loneliness in going to a party and not being able to share some chocolate with your friends. And a weird sort of loneliness in the fact that you know most people can’t understand because there are things about the illness that you can never tell anyone. My illness isn’t pretty. Someone once told me that no illness is beautiful, but I still feel that if all I had was the pain I wouldn’t be so ashamed of it. Whenever I have to tell someone that I have IBS, I always go bright red and/or want to cry. One time someone asked me what IBS was, and since I couldn’t bring myself to say, ‘Irritable Bowel Syndrome’, I ended up saying, ‘Lots o’ poopin’’ and nodding matter-of-factly. Quick thinking, Miranda. That sounds SO much better.
As an IBS sufferer I have become quite adept at calculating the likelihood that I will make it from one location to another without needing a bathroom. It can be quite a gamble. I make sure I don’t go anywhere for long if it doesn’t have an accessible bathroom. I also have numerous techniques for achieving audible privacy in various bathroom scenarios. I go to the furthest bathroom from people as possible, or hide behind the sound of talking at parties. In public loos I predict flush times and hide behind that noise, or (worst-case scenario), I just go for it and then don’t leave my stall until all the people who would know it was me have left. It’s freakin’ hilarious, but only in retrospect. I have to think about my bowel movement strategies far more than anyone should.
The disability access plan at uni is my best friend: It’s extremely hard to get a doctor certificate when I need to prove that I’m too sick to leave my house. People understand. I hate the idea of disability stopping me from following my dreams and people allow me to keep going. And the truth is, people understand because pretty much everyone has a big crap thing to deal with, health-based or otherwise. Maybe we can all afford patience for weakness because we know it intimately ourselves.
IBS taught me that. Regardless of all the crap I go through to manage it, if you’ll excuse my choice of words, I can’t bring myself to regret the experience. I can live with this illness and that makes it a blessing. Because every day I manage IBS, I learn more about allowing myself to rest; forgiving myself for weakness; and understanding others in similar situations. I had a terrible diet and lifestyle before I got sick, and I don’t think anything short of illness would have persuaded me to fix my life – this illness will thus make me significantly healthier in the long run. It reminds me constantly to turn my priorities back to a focus on health and a more direct pursuit of fulfilment than my usual intense career focus. IBS has taught me just how strong I can be. Knowing that you’ll be okay regardless of some of the depths you can sink to changes how you live. I thank God for IBS almost as much as I ask him to help me through it. And when I think about it, I realise that most bad things rarely produce purely bad results, because we always learn from them.
So next time you think about that big problem in your life, I guess I just want you to know that it doesn’t make you weak. Every moment you still haven’t given up is a moment of strength. Second of all, while you’re alone in some ways, you’re never alone in every way. And finally, consider what good things your challenges have brought to your life. When you tell yourself it will be okay, remember how true that really is. It will be okay.
Rainbows and unicorns.