Next week sees Crohn’s and Colitis Awareness Week, which looks to generate a better understanding of these life-changing conditions that affect one in 120 people in the UK. Gemma Bowen, Community Manager & Ambassador at Women in Games and Safe In Our World is one such person affected. Here she discusses the issues that those in her position face, whilst offering some advice to leadership teams on how to support individuals in their teams…
Monday morning, am I right?
We all know that Monday morning feeling: catching up on emails while simultaneously regretting that weekend feast or one too many pints. A quick, uneasy dash to the loo? An uncomfortable yet familiar and relatable experience.
For those of us with Inflammatory Bowel Diseases, such as Crohn’s disease or Ulcerative Colitis, unpredictable bathroom breaks can be daily, highly disruptive and oftentimes stressful and embarrassing.
As we aren’t all in the habit of talking about our bowel movements with work colleagues (or even friends or family) and since symptoms such as pain and fatigue are not always obvious, these conditions are classed as “invisible disabilities.”
But what is IBD, how does it differ from IBS, and what do managers need to know when supporting their staff with these conditions? Let’s take a look.
What is IBD?
Inflammatory Bowel Disease (IBD), comprising Crohn’s Disease and Ulcerative Colitis, affects over 500,000 people in the UK. It is a chronic, unpredictable, and episodic autoimmune disease in which the immune system attacks the digestive tract. It can cause severe pain and may require treatments including medication, regular scans and testing, and possibly surgery.
This differs from IBS (Irritable Bowel Syndrome), a functional condition that affects the digestive system and causes symptoms such as abdominal pain, bloating, diarrhoea, and constipation.
IBD is much harder to control. It’s lifelong and can worsen over time. Although we can manage it with our diet (no peanuts for me, please!), flare-ups can occur out of the blue and last for days. It can be triggered by stress, poor sleep, illness, medications, or even going out for a team lunch.
IBD: My Story
I was diagnosed with Crohn’s Disease in 2020, after almost 18 years of suffering.
For years, I went back and forth to the hospital, usually because I was in excruciating pain. I would spend the night in their care, then be sent home with a paracetamol or, if very lucky, some Codeine.
Because I wasn’t aware of Crohn’s or even IBD in general, it didn’t occur to me that the patterns and symptoms I was experiencing matched the condition. For example, I loved eating popcorn and would eat it whenever I had the chance, but I would be in absolute agony the following day. I would also medicate with Ibuprofen, thinking I was helping my stomach by reducing inflammation when, actually, I was making everything worse!
None of my doctors connected the dots either. It wasn’t until I had a particularly bad episode, brought on by COVID, redundancy and lots of fried onion rings, that someone took a look at me, writhing and ashen in a hospital hallway and said, “No, something isn’t right here”, and sent me off for a proper round of tests.
I didn’t openly share my medical situation when I was first diagnosed with anyone outside of my family, or at least not in any detail. Who wants to tell anyone they need to use the bathroom all the time? However, as things progressed and the pain worsened, I felt that I was in a position where I had to disclose the severity of my condition.
Ultimately, my bowel collapsed. I needed emergency surgery and an extended period of leave. Thankfully, my employer was empathetic and accommodating, but not everyone is educated about these conditions, nor are they aware of how minor adjustments can make work-life manageable.
Minor things can make a huge difference.
Handling Disclosure and Confidentiality
Receiving the news
If someone has mustered up the courage to disclose that they have IBD, it’s important that you respond with empathy and professionalism. Remember that it isn’t always easy to admit you are suffering.
In the games industry, where everything is about “crunch” and meeting those Steam wishlist targets, disclosing you have a condition such as IBD can feel like you are setting yourself up for failure; the risk of being let go because you are perceived as a burden to the team is very real and very much an added stress, and even though we should be protected, the reality is we aren’t.
Avoid Assumptions
How often does someone tell us they’re sick with a cold, and we say, “Make sure you take some cold & flu”? We feel like we should offer words of wisdom or share the latest YouTube breakthrough, but the truth is, IBD affects everyone differently. What worked wonders for Tim actually causes more problems for Beata.
Instead of jumping in with anecdotes or playing doctor, focus on their specific needs and comfort level when sharing, because chances are they’ve already tried everything they can to manage their condition and, of course, know their body better than anyone.
Do ask: “What kind of flexibility would help you manage your work right now?” or “What adjustments can we make to your workload or environment to suit your needs?”
Confidentiality and Language
In the UK, the Data Protection Act 2018 classifies health information as special category data, meaning it typically stays with the employee, HR and Occupational Health.
If your employee shares their condition with you, it’s very important that you consider your language when speaking about them to colleagues, the wider team, or external partners, using neutral phrases and avoiding any targeting to protect their privacy.
Don’t say: “Janet is off sick with Crohn’s again.”
Do say: “Janet is utilising her flexible working arrangements” or “using her approved health leave.”
Disclosing someone’s condition can leave them feeling extremely vulnerable or uneasy, so be sure to respect their desire for discretion and let them manage the disclosure on their own terms.
Implementing Immediate and Practical Workplace Adjustments
Employers have a legal duty to make reasonable adjustments for employees with disabilities (Thank you, Equality Act 2010!) to prevent them from being at a disadvantage.
As I mentioned earlier, IBD causes symptoms such as severe stomach pains, unpredictable bowel movements, extreme fatigue, joint pain and flare-ups, so taking the time to understand their specific needs will help your employee feel supported and allow them to work at their best.
Toilet Accessibility
If office-based, discreetly assign them a desk nearest to the toilets if they wish. This will help to reduce anxiety and embarrassment. Ensure nobody monitors or questions the frequency of bathroom breaks, though. For IBD sufferers, urgency is sudden and non-negotiable!
In the UK, those with IBD can request a Can’t Wait Card and Radar key (Crohn’s and Colitis UK), which gives them access to disabled toilets. If your company’s building is registered under the National Key Scheme, you could provide a Radar Key for them.
Flexibility and Remote Working
Allowing your employee the ability to work flexibly can help them manage their day in ways that suit their body. For example, starting at 10 am will enable them to manage urgent morning symptoms without the stress of needing to be in the office or on a Team’s call early.
Even if you have an office-based set-up, implementing a remote-work option during flare-ups can have a hugely positive impact, as working from home can remove difficult situations (like frequent bathroom breaks or uncomfortable journeys on public transport) from the equation entirely.
Environmental Support
Although it may not seem immediately obvious, some medications will require refrigeration, so providing a private fridge for discreet storage can ease anxiety or the need to rush home.
It’s also essential to provide a space for storing and reheating home-cooked meals, since many with IBD need to tailor their diets (e.g. Low FODMAP) to manage symptoms. As much as we’d love to join you for lunch at the canteen, that Spaghetti Bolognese may not be the wisest decision!
It’s also important to be mindful not to push them to eat with you or attend work-related hangouts. It can be challenging to say no, and we can end up feeling cornered when we’d rather avoid awkward questions or curl up on the sofa with a hot water bottle.
Managing Flares, Fatigue and Leave
There are, unfortunately, going to be days when we just can’t function. We tried to keep our flare-up at bay, but our gut simply isn’t going to cooperate, so we need to take the day (or the rest of the week) off.
Absence and “The Bradford Factor”
In the UK, many companies use the Bradford Factor to score absenteeism, which penalises frequent short absences. Work with your HR team to establish a protocol for sudden, IBD-related time off. By recording disability-related illnesses separately from general sickness, you can avoid triggering disciplinary reviews or warnings.
Agreeing on a simple form of communication, such as a text message (e.g. “I’m having a health flare”) could also reduce anxiety about needing to call in sick. Stress, even in small amounts, can worsen our symptoms.
Chronic Fatigue
You may have heard the term “out of spoons”, which essentially means someone has run out of their energy reserves. We all have a limited number of spoons, but people with chronic illnesses and disabilities can find their energy levels depleted at an alarming rate.
It’s not just physical energy, either. We tend to “keep calm and carry on”, but masking illness or pain takes a considerable amount of mental and emotional energy.
Task Prioritisation: With extreme fatigue comes brain fog, so helping your staff by prioritising essential tasks and deferring non-essential ones can make all the difference to productivity.
Focus Time: Allocate uninterrupted time for your staff to work without distractions or constant Slack pings.
Camera-Free Meetings: There are going to be days when we don’t have the energy to get ready in the morning, so allowing camera-free meetings is a huge relief.
Supportive Network: Ensuring a strong team culture that allows for cover and support is also crucial, as it’s often hard enough to “switch off” and hand over to others without the added pressure of a disability.
The Human Handbook: Additionally, you could implement the Human Handbook from Safe In Our World, which allows staff to share their preferred working methods, such as how they work best, and considerations for managers and colleagues when arranging meetings or attending events.
Medical Appointments
Due to the often severe nature of IBD, your employee may need to have regular medical appointments.
This can include:
– medical infusions,
– scans,- blood tests (if on immunosuppressants to monitor liver and kidney function, check for blood count changes and ensure the medication is at a safe and effective level),
– colonoscopies/endoscopies (to monitor current status of inflammation and check for early signs of colon or bowel cancer),
– extended leave for major operations.
Under the Equality Act, allowing paid time off for these specific appointments is often considered a reasonable and necessary adjustment.
Measuring Performance and Maintaining Trust
It’s easy to assume that because someone has time off for illness or is working remotely, that they aren’t doing their job, but it’s important to remember that you have hired (hopefully) an adult who has an understanding of their responsibilities within the workplace.
Outcomes Over Hours
Instead of focusing on the number of hours put in or physical presence, shift to evaluating on realistic, performance-based metrics, and work together to set KPIs/OKRs. As long as the work is submitted on time and to the expected standard, it shouldn’t matter if Julie took an extended lunch break because she needed to pop to the Pharmacy.
Regular (Kind) Check-ins
Set up regular 1:1s where you can discuss workload, career goals, training and expectations, as well as any health-related topics. As their Manager, you should show them that you value them as a person and a member of the team, with or without a health condition.
Overcompensating
With good intentions, you may feel you should lighten their workload by assigning the bigger, more meaningful tasks to someone else, but this will inevitably make them feel undervalued and redundant. Instead, openly discuss workload and standards, but allow some flexibility in how those standards are met.
Conclusion
Supportive management isn’t just kind; it’s a smart business move. With the average cost of replacing a skilled employee in the UK estimated at £30,614 (Oxford Economics), retaining talent is financially imperative.
People with chronic health conditions and disabilities want to work, and they absolutely can work if they are provided the opportunities to do so.
By taking a closer look at your company’s flexible work and sickness policies, you send a clear message of trust and support to your team members, which naturally leads to a stronger, more resilient and inclusive culture where everyone can thrive.
Gemma Bowen is a Community Manager and Content Creator in the Games Industry. She is an Ambassador for Women in Games and Safe In Our World; supporting equality, inclusion and mental health in the gaming space.
Photo by Marco Bianchetti on Unsplash
