To mark IBS Awareness Month throughout April, Alison Reid, CEO of The IBS Network, highlights how the Sheffield-based, national charity helps supports people living with IBS.
We hear from people, men and women, every day who are trying to cope with the pressures and stress of everyday life while also trying to manage the long-term condition of IBS.
The IBS Network is the UK charity, based in Sheffield, supporting people living with this often debilitating condition, which is thought to affect 12 million people nationally. While IBS is not in itself life-threatening it is certainly life-changing. People with IBS think twice about going anywhere new, seldom go on holiday and even sometimes make the decision not to be in a relationship. As a result, many people with IBS feel isolated and lonely.
Increasingly, we hear from people who are under disciplinaries at work because of their condition. Someone who was working as a communication engineer was told that a tracker on his van had identified regular detours between residential appointments which meant that he wasn’t completing his list of customer appointments in the allotted time. He was in fact searching out toilet facilities. The stress of the disciplinary made his IBS considerably worse. While it is the employee’s responsibility to share their condition with their employer, they can’t help if they don’t know, it is also up to the employer to ensure the culture in the workplace is such that people feel they can talk about their condition and be taken seriously and share without the fear of ridicule. One woman who called us said that she was constantly in trouble at work because she was regularly late. She would get to the end of her road and the stress of the prospect of 20 minutes on the bus meant that she had to run home to the toilet. Eventually, she gave up her job as a solicitor and retrained in a role where she was home-based.
After having been given their diagnosis of IBS many people say their doctors have told them to go away and find out what makes their symptoms worse and then avoid them. With the raft of inaccurate information on Dr Google it is no wonder that people don’t know where to turn. Often, they feel with repeated visits to their GP, their doctor becomes less than sympathetic towards them. Even friends and family do not take them seriously. Many people report that as the years have gone by, friends stop asking them out to dinner or for a night out, as if their IBS has been bad, they have had to let them down at the last moment. It is not easy for someone living with IBS to plan anything as they are unsure as to how they are going to be in, say, three weeks time. If they do manage to go somewhere new, the stress of ‘toilet-mapping’, constantly searching for the nearest toilet, is exhausting and they often have an IBS flare-up in the preceding days. For reliable information about IBS and to learn more about the conference on April 14 in Sheffield, please visit www.theibsnetwork.org.