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Crohn’s Disease: Some tips for coping at work with an “Invisible Illness”

By Kelsea Lindsey, Executive Assistant, American Express Global Business Travel

It was 2010. I was 19 years old, studying at university and generally loving life. Out of nowhere, I started getting constant stomach pains, so bad that I would throw up. Six months and a nauseating number of tests later, I was finally diagnosed with Crohn’s disease.

Crohn’s is an illness that causes inflammation of the digestive system. People with Crohn’s disease can experience periods when there are no symptoms, known as “remissions”, but can also experience periods when symptoms are very active, knows as “flares”.

Flares can be triggered at any moment and during one, symptoms can range from being a slight inconvenience, to requiring hospital treatment or even surgery. A flare can last anywhere from a couple of days to weeks, or even months. 

Crohn’s can be described as “invisible illness” because when symptoms are very active, other people cannot necessarily seeevidence of this. This can result in a lack of understanding, or accusations that people are “faking” or “overreacting”, which can cause a lot of shame and anxiety for sufferers.

I sometimes feel bad when need to take time out due to being in a flare, for fear that someone may say “you were fine yesterday” and “are you sure you are that sick?”.

Taking time off for major operations also used to fill me with dread, not the operation itself, but because of the reactions from my bosses and colleagues.

Our roles as PAs/EAs mean that, for a lot of us, we feel like we are “on call” 24/7 and do not have the time to be sick, which puts a great deal of pressure on us. For a Crohn’s sufferer, this stress is particularly bad as it can lead to a flare up. 

That is why I find it critical to remind myself of some key points when these thoughts come into my head to bring me back out of an anxious, stressed bubble:

  1. Be open and honest with your employer

This is controversial as some people prefer to keep their illnesses to themselves until there becomes a need to share it. I don’t suggest mentioning it straight at interview, however I would suggest bringing it up before you feel forced to, whether that be to HR or directly to your boss. For me, it made sense to mention it to my boss when I had a routine consultant appointment coming up. My boss was understanding and supportive and appeared to have some understanding of Crohn’s disease. If your boss doesn’t know a great deal about the condition you have, it may be worth educating them; most charities will have help sheets or handouts specifically for your employer, so I would recommend doing a bit of research. The more your boss understands, the more supportive they will be.

  • Always contingency plan

Our role means that we are always contingency planning; however, with an invisible disability that can rear its ugly head at any moment, it is even more important to do this. Are your handover sheets up to date in case of a last-minute handover to another PA/EA in the office due to illness? How far ahead is your boss’ calendar organised? For some, it is near on impossible to keep everything up to date due to an exec’s ever changing schedule, but do what you can to be prepared in case of a sudden flare up. 

  • Be Flexible (and promote your boss to be, too!)

Does your boss request that you are in the office 9-5, Monday to Friday? If you are having a flare, you may be able to do some administrative tasks from your home but the commute to work is often too much for your body to cope with; rather than take a complete day off, could you work from home instead? Maybe you need to start slightly later as your aching joints means that it takes longer to get up and ready when you are having a flare. Having this flexibility means that not only can you stop things falling behind, but your boss, and the company, will benefit. I am very lucky to work in an environment that gives me that flexibility if I need it, which means I can always be as productive as I can be. I would recommend anyone with an invisible disability approaches this subject with their boss or HR; your boss will appreciate the fact that you are trying to help the business whilst also helping yourself!

  • Take time out for YOU

This is important for any PA/EA, not just those with invisible disabilities! We are often so busy managing someone else’s life that we are quick to forget about our own. If we don’t take time out for ourselves, we get stressed. Stress is a key contributor to flares in many invisible disabilities so you must work to reduce this- Take your lunch breaks, leave the office on time, turn off your work emails in the evening and weekends. When you put yourself first, you will find that everything else falls into place.

Hopefully, using these tips will help you make your illness less invisible and more manageable. Your illness/disability does not define you, and doesn’t have to stop you doing the best in your career!