Non-visible condition
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The role of line managers in supporting employees with a non-visible condition

Eva* has a long-term condition – inflammatory bowel disease – that leaves her dealing with pain, exhaustion and disruption on a regular basis. Yet as someone who doesn’t ‘look ill’, when she first disclosed her condition at work she had to push to get the support she needed to help her manage her health and her role.

Disability covers a wide range of conditions, the majority of which – like Eva’s – are not visible. A non-visible condition can be just as life-affecting as a visible one, but they are often misunderstood by managers who can misjudge their severity and how they impact the wellbeing of employees. However, ignorance is no excuse: line managers need empathy, honest conversations and a willingness to learn in order to support employees with disabilities.

Eva works for a major UK bank. She talks about managing people’s perceptions of her health and educating her manager about her needs.

Disclosing a non-visible condition

I have a big thing about non-visible diseases. I don’t look unwell, and people can think ‘oh, everyone gets stomach-ache’, so I’m quite open now about how inflammatory bowel disease affects me. Sometimes it’s difficult in terms of my commute; I have a lot of pain in the morning so I can struggle to make it onto a train to get in for 9am. When I’m in work it’s usually ok, but if I eat something by mistake it can flare up and I might have to drop off a call and run to the bathroom.

I was on the bank’s graduate scheme when I got the diagnosis. It was quite competitive and you don’t want to come across as someone not able to do your job, so it was a real struggle at the start. At first I just wouldn’t eat anything in the morning to prevent any side-effects. When I got more comfortable with it, I opened up to the head of my team. She has Crohn’s disease, so I felt quite relaxed telling her, and this led me to disclose my condition to my line manager. If I was open with them it made sense why I had to work from home sometimes or come in late.

It’s a humiliating disease, and people don’t always want to talk about it. When I first disclosed, I probably made it sound a lot milder than it is, but as time went on I had to be more truthful about how severely it affects me. My employer does have a flexible working culture, but not so much in the area I work in. Initially we were in the quiet period so my manager happily let me work from home when I needed to recuperate. But in the busy period things changed slightly and work took precedence. Because I always seemed fine and did my work there were a couple of instances where my line manager at the time just didn’t get it. I would say, ‘I’m not feeling great, I’ll be online sporadically throughout the day,’ and she’d call me after work hours and want to talk through something.

Educating for change

Eventually I had to tell my manager what it’s really like. I had to talk her through a day in the life of my condition so she could begin to understand its severity. The hundreds of thing I have to think about daily, like what I can eat and when I can eat. I had to say, ‘I may be fine to pick up the phone, but you don’t know what I’m going through. I have to wake up at 3am to settle my stomach because it takes two or three hours. There are times when I’m crouching on the bathroom floor crying in pain.’ After this she did get better at supporting me, but it took a few instances where I had to be quite direct before she became supportive. And it definitely helped that her line manager understood the disease.

Building a culture of support

As it’s non-visible it definitely helps to be open, so I also disclosed it to my team. I didn’t want them to think I’m not doing my job if I’m working from home and they can see I’m not logged on. They were very supportive – probably more so than my manager at the time – and took the approach of: ‘Your health comes first.’ I also joined an employee-led network in the bank. A lot of good things have come out of it, and being a member means I’ve been able to connect with others that have my condition and discuss it with them.

What I would recommend for line managers, especially with a non-visible condition like bowel disease is really simple: read about it. The person in your team shouldn’t have to tell you everything about how it affects them, because it can be embarrassing. Managers aren’t always proactive about this and can leave the onus on the individual to educate them about their condition.

*Eva is not her real name