Having a disease like Crohn’s really forces you to surround yourself with support. Having people who can help you laugh at yourself and find humour in the more embarrassing moments, makes all the difference.
But having to manage this disease whilst negotiating everyday necessities such as the school run, or work, can be a frightening and uncomfortable experience.
Apologising to a teacher for your child being late because you had trouble functioning that morning, or not wanting to tell your boss the truth about why you can’t come in to work today (i.e. because you can’t get off the toilet), are just part and parcel of living with Crohn’s.
I have always refused to let my disease define me, so in general try to ignore any pain or discomfort it causes. The phrase ‘smile and wave’ has fast become my motto, and this has always been the ethos I live by.
Because of the sporadic nature of Crohn’s, I can be fine one day, then struggling the next. This makes working in specific shift patterns complicated; telling your boss that you ‘just don’t feel like it today’ isn’t an option, and bills need to be paid.
By not disclosing my every discomfort or embarrassing symptom, I leave myself open to people doubting the severity of my daily life. When I am in ‘flare-up’ mode, sometimes just rolling out of bed is the mountain I’ve already climbed that day before I’ve even got to work.
When I’ve had to explain myself to my colleagues and my superiors after taking unplanned absences from work, I have had to navigate the minefield of what I consider to be my personal business, and what they need to know for paperwork reasons.
Understanding that they have no idea of the physical and mental implications of Crohn’s, whilst attempting to communicate the difficulties and challenges that I face every day, often makes for awkward conversation.
Too much detail, and it sounds like I am exaggerating; too little and it sounds like I’m complaining for no valid reason. Additionally, feeling the need to justify my illness can have a detrimental effect on other aspects of my health, while also causing a knock to my pride.