Inflammatory Bowel Disease is difficult enough as it is when you’re allowed to lie-down all day in a room that’s no more than 1metre away from your toilet – but managing IBD whilst trying to hold down a full-time job can be somewhat trickier. How do people do it? When is enough, enough? What can I do to try and be more pro-active with balancing my wellbeing and my career?
The main trouble with Crohn’s & Colitis? It’s an invisible illness, which effectively means that ‘you dont look sick’ – how many times this month have you been told that, honey? Most employers are relatively nice people, and those who aren’t, normally have an HR department; the trouble is, even the nicest person in the world is going to struggle making exceptions for someone who continuously takes days of sick or someone who is constantly missing important meetings because they are in the toilet.
When I was first diagnosed, I owned my own clothes shop. I worked in there on my own, 7 days a week – yes, I was absolutely mad and oh my god was it bloody difficult and lonely! That’s another story…
Prior to my official diagnosis, I would find myself having to rush to our tiny, disgusting toilet at the back of the shop nearly 15 times whilst being ‘open’, which would mean constantly having to lock the front door, shut the shop, do my business…before then re-opening my actual business! It was a nightmare, but I blamed it on the anxiety of being a start-up combined with my addiction to black coffee. Let’s be honest, those two things probably didn’t help my flare-ups, but deeper down it was the onset of Crohn’s Disease.
The benefit of this situation was that I was my own boss – of course, my diagnosis and a severe cash flow problem meant that I ended up having to close down my beautiful shop in the pursuit of a more stable ‘career’ whilst I prioritised my health, but for the year that led up to this point, I managed to juggle toilet-urgency with business-urgencies.
From then, I worked temporarily at a plumbing company (honestly, I loved it) where my colleagues and boss were very aware of my recent diagnosis with Crohn’s Disease, and were therefore hugely supportive and flexible with my hospital appointments & countless moans about steroids. I presented myself with a hugely ‘can-do’ attitude and was positive almost every day, despite often feeling like absolute shit. I didn’t call in sick to work unless it was absolutely impossible for me to get into the car and drive the 15minute journey, and overall I think that my dedication to do a good job meant that the times when I was ‘sick’ were not viewed as problematic in the slightest. Looking back, I was so unaccepting of allowing myself to be sick – perhaps I was embarrassed? Perhaps I was scared of the consequences if I wasn’t able to ‘work’ like ‘normal’…
Currently I work at a small design agency in London, where everyone is flexible(ish) and nice(ish). Although I can’t work from home and my hours are non-negotiable, I am still able to attend my hospital sessions during the working day and I am allowed to call in sick when I am having a flare up. What’s difficult is trying to find the balance between looking after yourself and not looking like you’re taking the piss. There are times when I’m sure ‘they dont believe I’m ill’. There are times when it’s been uncomfortable to come in ‘late’ every week whilst I was being monitored on immunosuppressants. But it got to a point where I realised – this is my health! This is my body! I might feel awkward because I’m such a friggin’ goody two shoes, but I have to put myself first and look after ME, because no-one else will do that for me!
I used to work as a sales assistant in a clothes shop – not sure why I’m being vague, it was Urban Outfitters. This was prior to my diagnosis, but not that long beforehand. Interestingly, this is when my symptoms very slowly started to creep in…I would find myself rushing to the toilet in the middle of shifts, always blaming my active lifestyle, the stress of a toxic-boyfriend, having a shitty diet, etc etc. It was the most difficult thing to be on your feet all day, as the main point of contact for most customers, trying to grit your teeth and smile through panicking about shitting yourself. Luckily this was way before my Crohn’s had ‘properly developed’ into the nightmare that it later became, but hats off to anyone who has to work in this kind of industry whilst dealing with IBD.
What I’m trying to say is – maybe I’ve been super lucky in the world of work, as I’ve always been able to balance my illness with it. But speaking to so many of you has opened my eyes into how awful some companies / employers can be, and how for so many of you working just is not an option. Here are some top tips that might help…
- Be honest with your employer
I have always believed that’s it is better to be transparent with things, and it’s often easier for people to understand when they know the whole story. However, if you have a very formal work environment or you’re not on good terms with your manager, then it can be hard to find the balance between honesty and just too much information. Be as open as you feel comfortable with being, but in the long wrong, having your employer aligned with your situation is mostly going to benefit you when you need it.
- You do not have to disclose your illness in an interview (unless it will affect the job)
So many people ask me on my opinion of disclosing your IBD during the interview process. My thoughts are: unless having Crohn’s Disease or Ulcerative Colitis is going to impact your ability to do the job, then you do not need to mention this during the interview process. In a lot of experiences I have had, sometimes it actually comes up because I talk about Gut Instinct as my ‘out of work, work’ and it can gain a lot of interest, but luckily I have never felt discriminated against due to my illness (although shit, I know this can happen). If it feels relevant and applicable, and you feel comfortable talking about it, then go for it. If you don’t, don’t.
- Help them help you
Educate, honey! Knowledge is power and it is always helpful to have an ally at work. An amazing example is stress: we all know that stress can be one of the key triggers of a flare up, but we also know that most jobs do not come without stress. Give people a heads up when you are feeling overwhelmed and ask for help when you need it – and if you feel able to, explain why it would benefit you to be able to have a more manageable workload. People are not mindreaders, so if you need support, make it known.
- Explore your options for flexible working
Sadly this is not available in every world of work (I cannot do this in my job, wahhh) but a lot of companies these days offer the opportunity to be able to do your job remotely, work part-time in the office or even have flexi-hours. All this depends on your line of work and the industry you work in, but it may be worth exploring this option with your employee and seeing if there is something available which may make your career easier to balance with your Crohn’s / UC.
- If it isn’t ‘working’ then don’t work there
This one is probably the most important! Familiarise yourself with who to speak to if you feel like you are being treated unfairly, and if there is no-one within the company who would be able to help you deal with the situation then you can always contact agencies like Citizens Advice, who may be able to offer you better advice and support.
Inflammatory Bowel Disease can be debilitating and for many of us it is an impossible balancing act. There is absolutely no shame in not being able to work due to your illness, but do make sure you speak to all the appropriate people to get yourself accurately assessed, and to see if there are any benefits that may be able to help you – such as PIP.
For more information, please visit the Crohn’s & Colitis UK website to read more.