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Photo by Olena Sergienko on Unsplash

Work is something that has kept me up at night over the past year. Like many others during the pandemic, I lost my job.  While it was admittedly difficult financially to not be working anymore, the whole thing had also made me really upset.  This was the kind of upset where I ended up howling in the shower to sad Coldplay songs for a week straight. It wasn’t pretty. My really emotional response to being let go took me by surprise. As much as I’d loved the work that I did, when I actually thought about it, it was stressful a lot of the time, I didn’t put any boundaries in place and it was making me unwell. So why did I care so much? After a lot of soul searching and a bit less howling, I realized that it had a lot to do with how I viewed myself and how that had naturally changed once I’d been diagnosed with Crohn’s Disease.

All I wanted after that diagnosis was to be normal; to be like everyone else. In my world, normal people had jobs. It’s a societal expectation that once you finish school or get to a certain age, you start working.  You’re supposed to become independent and support yourself through whatever else you want to do with your life. That’s all well and good when you’re healthy, but what if you’re not? When I started trying to rebuild my life from the ground up, I realized that I had to work. I wanted to be like my friends who paid rent, bought groceries, and contributed positively to the community. There is a lot of pressure that we put on ourselves and on each other to be productive. Quite often, we are made to feel that if we are not contributing in some way to the greater society, we have no worth as an individual. For people with disabilities or chronic conditions, this idea is detrimental and not at all true. A lot of the time, it’s just not possible for us to hold down a traditional job or to anticipate days without pain. This is a huge challenge, and it means that we don’t slip as easily into the kind of employment that’s expected and taken up readily by our peers.

Photo by Glenn Carstens-Peters on Unsplash

I felt that I needed to work so much harder than everyone else to prove that I deserved to be in the jobs that I got because if I didn’t, they could just hire someone “normal.” I was terrified that my Crohn’s would make me unemployable, so I accepted anything that came my way. It didn’t matter if it was a very physical job that made my surgery scars bleed (thanks waitressing), or if I worked long hours and weekends while also trying to stomach new treatments for Crohn’s. I would take my medication, throw up, and then head to work like everything was normal because that’s how I thought I needed to present myself to an employer. I couldn’t show that I was in pain or weak because I was so desperate to keep a job. This was such a bad headspace for me to be in and of course, it made me so sick. It wasn’t until a friend of mine told me something important last year that I realized what I’d forgotten: having a chronic illness is a full-time job of its own. I had to take that into account because it was going to affect me in ways that others do not ever have to consider, like dealing with constant fatigue and debilitating stomach cramps.

I have to face the reality that I’m not always going to have colleagues or bosses that understand what I’m going through or are empathic when I need them to be, but that doesn’t mean that I’m not a hard worker, good at my job or worth as much as anyone else. I am not defined by my work or my productivity. I contribute as much as I am able to and that is enough. I do not have to accept toxic workplaces or situations that make me more unwell because I know that eventually, the right person or company will hire me anyway. I’ve been very fortunate to find a job in the last month and already, I’ve found the managers and environment to be so much more accommodating and warm. There is always hope for a better situation. My advice for other chronic illness warriors out there: know your worth and approach the world with confidence. You are so capable and incredibly strong and you bring a set of skills and life experiences that not a lot of other people have. Who needs “normal” when you can be chronically amazing? If you are able to work and you want to, go for it! There’s nothing to stop you from being a kick butt human getting stuff done your way and on your terms. You will always be more than a job and don’t let anyone tell you otherwise!

 

• About The Author
Alyssa is a writer, puzzle enthusiast and volunteering wizard from Perth, Western Australia. She was diagnosed with Crohn’s Disease in 2016 and ever since has wanted to raise awareness for IBD and help to create support networks for the warriors who live with it. She has a degree in Archaeology and Italian, spends her weekends doing boxing and muay thai, and lives with her fiance Nick.
IBD and Appearance Interpersonal Relationships and IBD Related Limitations

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