As I type this, I’ve just returned to Australia from a break overseas where I enjoyed paddle boarding, snorkeling, kayaking and all of the usual things holidays bring… and now it seems I am paying for it both physically and mentally. When you have a chronic condition, it’s very easy to slip into negativity for days. Here’s a glimpse into my mindset at the moment:
Why do I even bother enjoying myself if this is how I’m going to feel afterwards?
I don’t want to live like this.
This is all my fault… I never should have [fill in the blanks] when I was younger.
Have I been misdiagnosed? Surely, I can’t just accept that this is my new normal.
I have been struggling with Irritable Bowel Syndrome (IBS) for years now after catching a horrendous bout of food positioning on a trip to Europe over five years ago. If you’re not aware of what IBS is, it’s as horrible as it sounds.
When things get really bad, I feel like I am stuck in hell or prison. I’ve had countless encounters with people where I tell them what’s happening and they look at me like I’m crazy or it’s all in my head. I’ve been tested and checked for everything physically – the lack of tangible answers makes everything all the more harder to cope with. While overseas, I listened to a Mamamia podcast with psychic medium, John Edward, where he talks about many versions of hell existing right here on earth. When my IBS is really playing up and keeping me from living my life to its fullest, that’s what it feels like: hell on earth.
It’s frustrating. It’s tiring. It never ends.
Everyone’s illness and experiences are different and I believe that owning and sharing our stories empowers us. For me, I feel like I have been on a neverending search to figure out ‘why’ this is happening to me and how I can fix it. This is the vicious cycle of a chronic condition.
GPs, naturopaths, dieticians, nutrititionists, Cognitive Behavioural Therapy (CBT), gut hypnotherapy, chiropractors, reiki, different herbs and supplements, gut microbiome tests… you name it and I’ve tried it at some point. I don’t even want to think about how much money I’ve poured down the drain trying to find answers. Or even half an answer.
I’m working on acceptance.
I can live the rest of my life chasing answers that may not exist or I can choose to accept what is and take each day as it comes. One of the hardest things to do for me is to talk about my IBS – mostly because it’s embarassing but also because I don’t want to be treated differently because of something that might magically go away as mysteriously as it appeared one day (for all of the hopelessness this chronic condition brings me, I still live in hope).
Assumption is dangerous.
Reality is, I can go months being 100 per cent fine and then one day, ‘something’ sets my IBS off and I’ll spend weeks and even months trying to recover. With every chronic condition and especially IBS, everyone’s experience is different but for me, mornings are the worst. There is nothing I dread more in the world than an early morning meeting or an early morning flight. There’s the problem itself and then there’s the anxiety… which comes first, I can’t tell you. Yet if you ask me, on a conscious level, I don’t feel anxious or nervous – whatever is happening is going on behind the scenes in my brain. And of course, my IBS always plays up at these times. At least it’s reliable if nothing else.
During these moments when I’m having a flare up, I don’t even let my mind delve into asking questions about what everyone else thinks is going on. Maybe they think I’m odd or that I’m not interested in the work I’m doing. Or that I’m lazy or maybe they don’t give it a second thought. For someone who works in communications, when it comes to the harder conversations, I’m a real work in progress. The courage that the great Brené Brown calls forward in her work is sadly lacking in me at the moment.
The everyday things can be incredibly hard.
Enjoying a meal out with your friends or partner. Coping with the on and off chronic insomnia and having to show up the next day and try to think. Listening to someone while in physical pain… chronic illness impacts every facet of a person’s life. It can feel like it’s easier not to leave the house or to decline that job opportunity or social invite, or even pretend this isn’t happening to you. IBS has been incredibly taxing on my mental health. Just when I allow myself to think it’s getting better, it inevitably shows me otherwise. That said, these days, I have a much better grasp on my limitations and am very careful about setting my boundaries and honouring them.
They say nothing can buy your health and unfortunately, I’ve learnt this the hard way. No amount of money or career success can ‘fix’ my IBS but in a twisted way, it has made me appreciate the small things in life. I know I am not the only person living with IBS or a chronic condition but it can feel so lonely at times. Especially during the worst moments.
If you have any personal experiences or thoughts to share with others in the comments that might help in any way, please do. We can use our pain for good.