It’s World IBD (Inflammatory Bowel Disease) Day today, which is a great opportunity to talk about navigating work and life with a chronic illness and to increase awareness of Crohn’s Disease and Ulcerative Colitis. This is a bit of a vulnerable post for me. I hope that it’ll provide an insight into one of the reasons why I’m so passionate about supporting people to find their version of success, no matter what’s going on.
I don’t think I reacted well to being diagnosed with Ulcerative Colitis in 2008, after more than a year of searing pain, significant weight loss, and extreme fatigue. I was pushing through, showing up to my job at a pharmaceutical company during a year in industry for my undergraduate degree. I thought that to ‘do well’ I needed to show up regardless of the pain and exhaustion I felt. I lived with flatmates and I struggled to wake up, travel to work without falling asleep or to pull my weight doing chores, opting instead to lie on the floor until the pain became manageable. It was a time where I felt so much shame and embarrassment, fear of being found out, and worry about losing my ability to ‘be successful’. Also, infuriatingly, I looked as well as my healthy fellow interns. Those feelings were so real at the time, but looking back I know now that you don’t have to feel ashamed about what’s happening to your body when it’s out of your control.
When I prepared to tell my bosses about the diagnosis I was nervous and worried about how it would be received. There were so many unknowns - how would my life look, would I need medication, surgery, would it get worse? It had been impressed upon me by the medical team that I was going to have colitis for the rest of my life. I spoke to my bosses and was surprised to receive an outpouring of support. My colleagues had more compassion and kindness for me than I did! It helped that I worked in a pharmaceutical company surrounded by ex-nurses who knew what this meant. Many others don’t have that luxury or that understanding, which can mean the naive judgement and embarrassment felt can really affect their self esteem and health itself; Colitis and Crohn’s can get worse with stress so it’s a double whammy! Supportive colleagues are essential when working with IBD, and they can only support you if you feel safe and courageous enough to share with them.
The following years I pushed myself through the final year of uni, an intensive masters degree and a PhD. I had so many flare ups. My illness was rarely far from the surface due to being on rubbish medication. Looking back, my mental health was in the absolute pits. When I asked for an extension to complete my PhD, my advisor (a pharmacologist) gently asked why I was putting up with so many health difficulties when I should be on a different medication. I’ve summarised some intense times in a couple of sentences - it doesn’t cover the every day necessities of family, friendship, love and establishing a career. It was an awful lot to deal with, and I’m not alone in all of this - many people with IBD have to face this and more, even in 2024. I made the decision, largely because of the effect of stress on my body, to not follow an academic career because it could be unstable and deeply competitive at the start. I had so many feelings about my decision, including disappointment that I wouldn’t be continuing on in research and fear of letting people down and wasting all of those years of training, but an important conversation with a brilliant colleague reminded me that I didn’t have to go down the path laid out in front of me, I could choose something that worked for my life.
In 2014 I went onto a new medication to me and it changed my quality of life. My symptoms improved massively, I was able to think about looking after myself, eat better, exercise and try to find a way to understand the impacts of the illness on my life. I spoke to other people with IBD, therapists and nutrition experts. I found a job where I could work alongside scientists, to make their career progress easier. I was able to make a significant impact for the organisation and build a career over time. I loved the job, the new life given by the medication and reduced stress, and I loved having energy to do things other than just work.
Stressful times will come at different points in your life and your career, and my body is very loud with its response to stress. The people closest to me have mostly understood this, but sometimes I’ve needed to do a bit of extra admin and education to explain why I can’t do certain things, eat certain things or similar. I imagine it doesn’t always feel fair when you’re in the office and you see colleagues getting ‘special treatment’ but not all disabilities and illnesses are visible.
It took me a lot of time to come to terms with having ulcerative colitis. I prioritised my ability to work and contribute to the companies I worked for. My work never truly suffered, but maybe that was to the detriment of my body and my mental health. Over the past sixteen years I have worked really hard to learn how to rest. I’ve learned that the limit does exist, if only when it comes to my health and wellbeing. Rest is crucial for maintaining balance in productivity, and self-compassion is paramount for living with chronic illness and good mental health.
So, what can you do, if you have Crohn’s or colitis and are struggling at work? Here are a few suggestions:
Talk to someone. Crohn’s and Colitis UK has useful guides for employers, employees and students to consider, you can check your national charity/association for their guidance if you live in a country other than the UK.
Treat yourself with the utmost patience and kindness. Think of the person you love the most. How would you look after them when they are poorly?
Notice your feelings: what are they telling you? You do no one, especially yourself, any favours by bottling them up.
Figure out your spoon capacity each day, be respectful of it, and communicate it with your colleagues and people close to you in your life.
Make a list of the wins you’ve had at work. Bring the list out when your brain inevitably plays back your mistakes when you have a poorly day.
And if you manage someone with IBD, be supportive, offer compassion: be human! Consider working collaboratively for contingency planning. Reserve your judgement and trust that they know their capability or will talk to you.
What else might you suggest that could help someone with Crohn’s or colitis at work?
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