“Why would I tell my employer I have hepatitis?”

“Why would I tell my employer I have hepatitis?”

In preparation for World Hepatitis Awareness Day, Wave-length asked a group of people with hepatitis if they disclosed their condition to their employer and their reasons why.

Hepatitis C is one of the more serious types of viral hepatitis as there is no vaccine and cannot be cured, only treated and managed. A significant number of those who are chronically infected with hepatitis C will develop liver cirrhosis or liver cancer, resulting in 350,000 – 500,000 people dying each year from hepatitis C-related liver diseases.

So with a virus this severe that is very likely to lead to further health problems, how do people find working while tackling the emotional and physical strain that the symptoms, treatments and side effects present? Do they seek the help of their employer or do they keep quiet therefore avoiding the risk of discrimination, making employers oblivious to their illness?

Wave-length asked a group of people with hepatitis if they disclosed their condition to their employer and if not, what their reasons were for this. Some people’s answers were quite defensive, almost as if we had asked a question where the answer should have been obvious. “Why on earth would you tell your employer that?” was one response. In the early stages of the research it became clear that Hepatitis C is a sensitive subject for many of those who have it and assumptions have been made about the condition, not many people fully understand what hepatitis is and its implications. Which means many people who suffer from the condition do not feel confident about discussing it with their employers and therefore carry on working in silence, not receiving any support in the workplace.

From the people that we asked, 8 out of 10 said that they would not disclose having hepatitis C to their employer as they do not feel their condition is understood and has a lot of assumptions attached to it, which they believe would lead employers to doubt their capability to still do their job, ultimately resulting in discrimination and possible dismissal. One person commented,

“Why would anyone want to share that information with their employer? Jobs are hard enough to come by without giving them a reason to fire you. Equality in the workplace sounds great in theory, but telling an employer that you have a contagious disease is a free ticket to unemployment.”

When receiving responses, much like this one, that form part of a pattern, it makes you realise how little support employees feel they get from their employers.

Other people worry that having hepatitis C makes them less socially acceptable which they believe would reflect upon them in the workplace. When asked ‘why did you not disclose your condition to your employer?’ on person replied with,

“I have seen how people with more ‘accepted’ diseases are talked about in not so nice ways. Even HIV is more acceptable than HCV nowadays. It’s emotionally and culturally complicated and it would be nice if the disease was more openly talked about.”

From the people we spoke to, it is clear that the main reasons they will not disclose that they have hepatitis to their employer are that they don’t find their employer approachable or they felt they worked for a company that was uneducated and ignorant to the condition.

Wave-length spoke to Maria Cassell, a former employee of Ann Johnson, who has suffered from and been treated for hepatitis C. She talked to us about her diagnosis, the treatment she went through and how she coped at work. Unlike some of the negative feedback we had around hepatitis in the workplace, Maria explained that while she was working for Ann, she felt she had a very good relationship with her which made it so that she could confidently talk to Ann about having hepatitis C and what I meant for her. During the interview with Maria she told us that Ann put things into place in order for her to still be able to carry out her role within the organisation, and something as simple as being allowed to work from home had made a huge difference to Maria. She explained that on some days, simply getting up, washed and dressed and then having to face the drive to work was too much for her, so for her to be allowed to work from home made a huge difference in her performance. However, like the majority of the people we have spoken to, Maria feels that people, especially employers, should be more educated about the condition and should also offer more help and support within the workplace. She left us by saying,

“In many situations in life, ignorance breeds prejudice and fear. I found this to be true with hepatitis C. Education is the key to preventing prejudicial and discriminatory behaviour, so my advice to everyone is to learn about it in order to know how to physically deal with it and that in turn will make the psychological struggle easier. If you know someone who has hepatitis C, particularly if they are undergoing treatment, don’t be afraid to ask how they REALLY are or offer any support or help you can – it will always be appreciated even if not taken up. I have vivid memories of the support I was given throughout my time on treatment and I truly believe it helped me get through what was a truly hard time in my life.

It doesn’t matter who you are or what health challenge you may face, whether personally or as a friend, relation or colleague, I truly believe that education can make the world of difference in helping people to cope and support each other and will help eliminate prejudicial behaviour.”

Wave-length believe that no matter what disability, mental health issue or condition a person has, there is always something that can be put into place by an organisation to support and help them stay in work.

To see Maria’s interview and download employer guidance notes and training materials you need to be a member of the Wave-length Well. For more details about this, or to comment on this news article, contact lauren@wave-length.org.uk.

© 2014 by Wave-length. All rights reserved. No part of this document may be reproduced or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without prior written permission of Wave-length.

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