How to become more inclusive of invisible illness

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Millions of people across the UK live with an invisible condition, from epilepsy to Crohn’s disease. As organisations think about bringing people back to the office, Sarah Hollobone urges them to consider how they can support people with health needs that are not immediately obvious.

An estimated 9.5 million people across the UK live with an invisible condition, meaning one in seven are managing a medical condition alongside their jobs, in workplaces which do not always take this into account.

As part of its ‘Not Every Disability is Visible’ campaign, Crohn’s & Colitis UK is launching Are You IN? a selection of support and resources for companies so they can pledge their commitment to being more inclusive of people with invisible conditions.

Looking after employees’ wellbeing can benefit employees, the organisation and wider society. Companies that recognise the needs of people with invisible conditions can improve the productivity of the workforce, lower staff turnover and drive better employee wellbeing and satisfaction.

The resources provided by the Are you IN? campaign can help employers develop better approaches to managing long-term conditions in the workplace, to help people living with invisible disabilities thrive at work.

Living and working through the pandemic has been challenging for everybody, but for employees with invisible disabilities, things have been especially difficult. However, the pandemic has given some opportunities to work differently – maybe remotely or flexibly – which has allowed them to better manage their health and conditions.

As we consider the future of the office post Covid, let’s not go back to normal. Let’s take this chance to make a more inclusive workplace for everyone.

What is an invisible condition?

For people living with an invisible disability, the hidden nature of their condition can make it difficult to disclose, as the effects it has on their life are not immediately apparent or easy to understand. This can lead to employees feeling as if they cannot ask for adjustments to help them manage their condition.

There are many invisible disabilities, including autism, epilepsy, mental health conditions and others. Crohn’s and colitis cause ulcers and inflammation in the gut and there is no cure. Symptoms include the urgent and frequent need to poo (often with blood), extreme fatigue and severe pain. They can impact on mental health, personal relationships, and nearly every part of the body, leading to a lifetime of medication and, in many cases, life-altering surgery.

For people living with Crohn’s and colitis, the stigma surrounding discussion of bowel habits can make it doubly hard to disclose their disability to an employer. You may be employing someone with Crohn’s or colitis right now, without knowing, as they are so used to hiding it.

For people living with Crohn’s and colitis, the stigma surrounding discussion of bowel habits can make it doubly hard to disclose their disability to an employer. You may be employing someone with Crohn’s or colitis right now, without knowing, as they are so used to hiding it.”

Rosaleen, an assistant lead for family services at the RNIB, lives with with ulcerative colitis. She says: “I’m very upfront with my manager about it and she’s very helpful and she understands. She’s excellent. Her approach is very much that my health is the most important thing. She says ‘we want to support you, any way we can’. And that encourages me and other staff to be open about these things early, so that they don’t escalate into anything more serious or anything like that.”

By joining the Are You IN? campaign, employers can show that they understand and support their employees with invisible disabilities and make it easier to open up about them.

What employers can do

The Are You IN? campaign is designed to empower and educate employers and employees about invisible disabilities. Pledges centre around educating staff about invisible conditions, empowering people to have conversations, and adopting work policies that better support managing an invisible disability and conditions alongside work.

As we gradually return to the office, it’s vitally important that workplaces comply with government recommendations for a Covid-19 safe workplace. As part of this, employers could carry out an audit to see if their employees feel invisible conditions are supported at work, if reasonable adjustments currently in place are working, or if further alterations are needed.

The switch to remote and flexible working during the pandemic has allowed many people with invisible conditions to better manage their health. For them, a return to pre-Covid normality would be a step backwards. Companies should offer remote and flexible working as a permanent feature of the workplace going forward to improve employee wellbeing plus productivity and job satisfaction.

Max, a regulatory affairs specialist at Smith & Nephew, livies with Crohn’s disease. Max says: “I’m more productive working from home as I have less distraction, and I can take breaks when needed. I’m far less stressed with not having to commute and I can sleep for longer, both of which are really beneficial to my health. I’ll be pleased to get back to normal from a social perspective, however, I’m hoping that going forward there will be more focus on flexibility in the workplace.”

Flexible working help people manage the symptoms of invisible disabilities better, as well as being a more efficient way of managing medical appointments and treatments that occur during working hours. Remote working can also support employees to return to work after periods of sickness or surgery.

Flexible working help people manage the symptoms of invisible disabilities better, as well as being a more efficient way of managing medical appointments and treatments that occur during working hours.”

Spreading the word

As well as empowering managers and HR to better understand invisible disabilities, it is important to ensure this is spread across the whole company. In addition to awareness training and conversation guides, you can put in place visible changes to promote staff engagement with the campaign such as Not Every Disability is Visible toilet signage. Are You IN? campaign assets include email signatures, Outlook profile pictures, screensavers, stickers and posters.

As part of the Are You IN? campaign, you will appoint an Invisible Condition Rep as a point of contact to signpost colleagues towards the campaign resources and relevant company policies or employee assistance programmes.

Building a strong reputation for being a workplace that values employee wellbeing has never been so important. If you’re signing up to support employees with invisible disabilities, then make sure you shout about it. Announce your support of the campaign internally and externally. Are You IN? campaign assets make this easy by providing template internal comms, a press release and social media posts.

Let’s not go back to normal post-Covid. Now is the time to make a change and build a better, more inclusive workplace for everyone, whether your company is big or small, whatever your role. So, Are You IN?

Sarah Hollobone

About Sarah Hollobone

Sarah Hollobone is campaigns manager at Crohn's & Colitis UK.
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