by Sanna Lönnfors, EFCCA Research and Project Coordinator
I recently participated in an online focus group on the topic of Work and IBD, the theme of this year’s World IBD Day. With seven fellow IBD patients, we thought of our job hunts and careers, how IBD has or has not affected our working lives, and what advice we could give to others who have IBD.
The points raised in the focus group were, of course, based on the personal experiences and opinions of the participants. Moreover, legislations and policies differ from country to country, which makes it difficult to give recommendations that would fit to IBD patients all over the world. Still, I believe the ideas and advice that came up in the discussion reflect the situations that many IBD patients face in their working life, and I hope there’s something for everyone in the tips we came up with in the discussion.
- When you are on a job hunt, don’t focus on your IBD and the things you can’t do because of it. Believe in yourself and your skills, competences, education, work experience, and qualifications. IBD doesn’t in any way decrease your knowledge or skills. If you are perfect for the job, you are just as perfect also with your IBD.
- Look for a job that fits your IBD, and keep your mind open. The perfect job may not be related to what you have studied and what you originally planned as your career. You might want to think twice about physically demanding or emotionally stressful jobs, working in shifts, jobs where your illness may compromise your own or someone else’s safety, or any jobs that require being in places where there is no access to a toilet. Ideally, you should enjoy and be empowered by your job. Even if you could do a certain job if you really struggle, it might not be worth it if IBD makes it really uncomfortable and you go home completely wiped out every evening. Prioritize your own well-being. You don’t want your job to give you an IBD flare-up.
- There are jobs where you may have to disclose any health issues or go through a medical examination as part of the interview process – and then there are jobs where you decide if you want to mention your IBD or not. If you decide to tell about your IBD in an interview, don’t make it sound worse than it is. Focus on how good you would be in the job and how much you want the job. Being open about IBD may come in handy later on, if your disease unexpectedly gets worse. If it then comes as a surprise to your employer, they might feel like you lied to them or hid things from them in the interview.
- If you face any discrimination because of IBD, do not tolerate it. Talk to, for example, your superior, your union, or your local patient association. Take action, and get support. Remember that no one has the right to discriminate you because of your disease, and any actions you take against discrimination at work may help not just you, but also lots of other patients with IBD or other chronic illnesses in the future.
- Telling your colleagues about your IBD and helping them understand it may make your life at work a lot easier, especially if your disease gets worse. It may feel scary to tell others, but you might be positively surprised. In our focus group, no one had regretted telling colleagues at work about their IBD. On the contrary: most colleagues had been very understanding and supportive.
- Depending on where you work, you could even get everyone together and make a little presentation on IBD. Raising awareness is never a bad thing and you could end up helping other IBD patients in the same environment as well. Being open about IBD makes things a lot easier if you need to go see a doctor, go for blood tests etc. You never have to come up with excuses because everyone knows it’s your IBD.
- If you get a flare-up, talk to your employer about your working arrangements. Try to limit meetings and your workload in general. See if you can work flexible hours, or work completely or partly from home. If your tasks can’t be done from home, talk to your employer about working on different tasks for a while. There is always a solution!
- Keep an IBD survival kit with you at work, especially during a flare-up – whatever it is that you might need during the day. For example, your medicines and other medicines that you might need; copies of prescriptions and other medical documentations; wipes, tissues, and creams; sanitizer or disinfectant; spare underwear; your own snacks so you know what you’re eating and can be sure that it is safe for you.
- If you have to travel for work, your own car may be more comfortable than a bus or a colleague’s car. This way you can stop whenever you need to and don’t have to explain anything to anyone. On an airplane, get an aisle seat near the toilets so you can make it there faster, if necessary. Pack spare clothes in your carry-on, bring your own snacks, and an emergency kit with wipes, tissues, painkillers etc.
- As in life in general, be brave in your working life. At least try before deciding that a job is impossible for you because of your IBD. And if your dream job turns out to be impossible, don’t let yourself drown in self-pity. Be sad for a while, but then pick yourself up and find a new dream. Your perfect job will come!