Guest Writer Laura

Hey, I’m Laura, I’m 23 and I have ulcerative colitis. I’m going to talk about how I’ve balanced my IBD and my career so far, but first, a bit of back story...

I developed (and was diagnosed with) IBD when I was 19 years old. I was at university studying geography, at the beginning of my second year. IBD definitely affected my time at university but it was more my social life that temporarily suffered rather than my grades! When I had a flare up I stopped going on weekends away with the mountaineering society and would only occasionally go on a night out with friends due to tiredness, long queues in the toilets and embarrassment over my steroidal moon face! The positive side of this was that I had loads of time to stay in and work on my university assignments. I remember doing most of the revision for one particular exam sitting on the loo – good times! Luckily I had really supportive lecturers and friends who were happy to share their notes with me from the lectures I missed.

My super flexible university timetable was great from an IBD point of view but at some point in my final year I realised that this wouldn’t always be the case and soon I would have to get a job and live in the real world! I ended up applying for a job at a charity based in Oxford. I got the job and am still working for the same organisation two years later. When I turned up on my first day, I remember having a number of worries about how my IBD would affect my work. I’m pleased to say that these days I rarely worry about this so I thought I’d share my seven steps to achieving work-IBD zen...

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      1. Consider your commute to work

I’m currently looking for a new place to live and my number one priority is finding somewhere which is easily commutable from my workplace. It isn’t always possible to live next door to work but a short commute can really help reduce anxiety when your stomach isn’t feeling great. Actually I lied, this is my number two priority, my number one is to find a house that has two toilets.

 2. Consider your place of work

I work in an office which is really perfect for anyone with IBD. I imagine that driving a lorry or working in a customer-facing role might be much more difficult to deal with when you’re having a flare up. When I was particularly ill last year I did have to cancel a lot of meetings but I still got loads of work done because I could chill out in the office or even do my emails from home.

3. Try not to get frustrated with people

If you’re like me, you might occasionally get annoyed with people who don’t understand exactly how you feel. For instance, you might start thinking things like “this meeting is so long, everyone is so insensitive for not realising I feel really tired and my stomach hurts and I might need to run to the toilet any minute!” No-one is psychic, so just ask for a break instead, or see step four...

 4. Let everyone know

The best thing I ever did was tell everyone I work with about my IBD, this has made my life so much easier. It can be difficult to talk about IBD because no one likes to discuss their bowels(!) but it’s so worth it. If you just say you’re ill that’s okay but colleagues will expect you to be feeling better the week after. It can take much longer to get out of a flare up so it’s really important that people know this. You just have to find the right way to do it. For my direct line manager and our HR representative this was a long email explaining all the gory details that can be hard to talk about out loud. For other people in the office, I have perfected a way of casually mentioning my IBD without using the word “bowel” once. I.e. “I have this colitis thing, my colon is inflamed so my stomach hurts and can be a bit dodgy etc etc”. I also enjoy mentioning famous people who have IBD such as Sir Steve Redgrave or footballer Darren Fletcher!

5. Have a laugh with your colleagues

Once you’ve accomplished step four, this is the next thing to do. When I had a flare up last year, two courses of steroids resulted in a pretty epic moon face. This usually gets me down but I was weirdly cheered up by my colleague singing “moooon face dot com” whenever I walked into the office! So much nicer than everyone skirting around the issue.

 6. Take control of your calendar

Once I’d been working in a proper job for a few months, I realised that I could make my calendar work to suit me. This really reduced my IBD-related anxiety. Obviously you need to do this in consultation with your boss. I don’t know how it goes for other people with IBD but when I’m flaring up my symptoms are particularly bad during the morning. So I arranged with my boss that I would work from home each morning and come into work in the afternoons for meetings if I felt like it. Flexi-time means I can have a lie-in if I’ve been unwell during the night too.

 7. Check out Good Desk, Bad Desk

Finally, Crohn’s & Colitis UK have a great website called Good Desk, Bad Desk which has some useful resources and interesting statistics on employment and IBD. I sent a link to this website to some colleagues when I first started and I think it really helped them understand things.

I hope these tips are helpful for people with IBD who are just about to begin their career after school, college or university. I realise that I’m pretty lucky to have great employers who allow so much flexi-time but I think this is becoming more and more common, especially now so much work is done online. It must have been much trickier to keep up with work for people with IBD before the internet existed! If you have any tips of your own I’d love to hear them so please post in the comments section below.

Employment and IBD Part 3 - Travelling to Work and Returning to Work After Time Off

If you have Crohn’s Disease or Ulcerative Colitis – conditions collectively known as Inflammatory Bowel Disease (IBD) – you may be concerned about your employment position. You may be employed or looking for a new job. You may be on benefits and are thinking about returning to work. While IBD is a chronic condition, with appropriate treatment it is often possible to remain well for long periods and many people with IBD are able to work full-time.

This series of articles sets out to answer some questions you may have about your possible options and how you may be protected by law. The quotations that are included are all from people who have IBD who responded to a 2011 Crohn’s and Colitis UK survey on IBD and employment

Travelling to work

Many people with IBD tell us that travelling to work or jobs that require travelling are particularly difficult. You may find it helpful to obtain a key for locked public toilets for disabled people from RADAR (The Royal Association for Disability and Rehabilitation). RADAR runs a National Key
Scheme for people to access specially adapted toilets that are kept locked to avoid vandalism.

They also provide a location guide to approximately 7,000 toilets throughout the UK. You may also get help with travel costs from Access to Work, as mentioned in the previous article.

“Because of lack of toilets I have to be

careful about my route and avoid

stressful situations like tube

stoppages. I dread being stuck on

the tube. Once I am in work I am

generally OK.”

Returning to work after a long absence 

If you have been off work for several weeks or months because of your IBD, you may feel anxious about returning to work. It is common for people to lose confidence about being able to return to work even after a relatively short time away on sick leave. Keeping in touch with an employer can help, and it may be helpful to set up an agreed procedure, if possible in advance, for how your employer will maintain contact with you whenever you are absent. This could specify a timescale, for example, suggest contact once you are absent formore than two weeks and/or specify the method by which you would prefer to be contacted e.g. phone, email or personal visit. You may prefer contact from a coworker, close colleague or union representative rather than your direct line manager.

It is important not to feel pressured into returning to work too soon before you are well. You might want to discuss a phased return to work, as you may not be able to work a full day at first. For example you might want to start working only a few hours each day and gradually increase your hours over time. Or perhaps you may want to ask for a reduced work load or lighter duties to begin with. Generally the more open you are about your needs, the more likely it is for your employer to be open and willing to make reasonable adjustments to help you back to work.

If you have to remain away from work until reasonable adjustments are in place (for example, moving your work station close to a toilet), arguably this should not be recorded as ‘sick leave’. 

“My employer is very supportive and

gave me full pay when I returned to

work from operations, and asked me

to return on a phased basis for the

good of my health e.g. two hours a

day first week back, three hours a

day the second week etc., until back

up to seven hours a day.”

If you are absent from work because of a disability-related sickness, it is important that this is recorded separately from other sickness absences, such as having a cold. This is to make sure that you are not discriminated against if, for example, decisions about promotion or bonuses take other sickness absences into account.

In Part 4 - Leaving Work and Financial Help