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Thousands of people with invisible conditions like Crohn’s and Colitis, are suffering in silence, being subjected to discrimination — sometimes even harassment — because of the stigma and misunderstanding surrounding their conditions, just for trying to use the accessible toilets they urgently need.

This needs to stop.

We are on a mission to change public perceptions of disability, end stigma and ensure everyone who needs to use an accessible toilet can. Through our campaign – Not Every Disability is Visible – we will make the invisible, visible. We’re calling for the general public, companies, and the Crohn’s and Colitis community to come together to make a positive change to the lives of those living with an invisible disability.

About the campaign

One of the major anxieties for people living with Crohn’s or Colitis is being refused toilet access or being confronted as to why they are using a ‘disabled’ facility.3 Our UK-wide campaign, Not Every Disability is Visible, aims to change signs on accessible toilet doors to help people with invisible conditions feel more confident using them and stopping the stigma that people with Crohn’s or Colitis face every day. Our sign has already been installed in nearly 2,500 supermarkets, 150 retail areas across the UK and 15 of the UK’s major travel hubs.

These signs make a real difference to the lives of people with Crohn’s or Colitis – over 80% of people with the conditions said they felt more comfortable visiting places with them installed.

This year, in partnership with Janssen-Cilag Limited, a pharmaceutical company of Johnson & Johnson, we are focussing on high street restaurants and pubs, encouraging them to make a positive change by displaying our accessible toilet sign. We are already in talks with several outlets to install the Not Every Disability is Visible signs in their UK branches, but we won’t stop until every company on the UK high street have changed their signs. We are calling for the public to support us in this mission by signing up to add their voice to our campaign through our website.

Supporting our campaign are four inspiring patient ambassadors who are featured in a series of powerful images highlighting the hidden nature of Crohn’s and Colitis. Hannah, Muneeb, Ben and Marta, have each shared their personal experiences of living with these conditions, and the ofteninvisible challenges they have faced are depicted in each of the campaign images.

What are Crohn’s and Colitis

Crohn’s and Colitis – the two forms of Inflammatory Bowel Disease – are lifelong diseases of the gut. They are painful, debilitating and widely misunderstood. And there is no known cure.

Crohn’s and Colitis are a hidden – and growing – health crisis. It’s likely someone you know has one of these invisible conditions – more than 300,000 people have either Crohn’s or Colitis in the UK alone, but the real number could be almost double that.

When you have Crohn’s or Colitis, your immune system doesn’t work properly. Your body starts attacking itself, causing ulcers and inflammation in the gut. Common symptoms can include urgent and frequent bloody diarrhoea, severe pain, extreme fatigue, malnutrition and dramatic weight loss.

Crohn’s and Colitis don’t just affect your gut. They can affect almost every part of your body and every aspect of your life: from your hormones and digestion to your energy levels and mental health. People living with the conditions face a lifetime of medication and, in many cases, major surgery. If left untreated, they can be fatal.

Stigma against living with Crohn’s or Colitis

Unfortunately too few people who are unaffected by these conditions understand how devastating their effects can be. It leaves many people struggling emotionally and psychologically, not just physically – managing a myriad of symptoms which can prevent them from leading normal lives. With many of these symptoms “invisible” and manifesting internally, it can appear that someone looks healthy, but they are in fact incredibly unwell. This creates stigma and misunderstanding surrounding these conditions with thousands of people suffering in silence.

We need to challenge this stigma. We need to stop people facing discrimination when using accessible toilets which can be vital for them in managing their condition and living a full and active life.

For more information about the campaign, and to download the campaign resources, visit: www.noteverydisabilityisvisible.org.uk