We asked people about their experiences of telling other people about their long term condition or disability. Some of those we spoke to said that they were used to talking about their condition and were happy to share with friends, colleagues or managers. However, many people spoke of the difficulties or the limits of talking about their condition or disability.
[Note: We recognise that we were privileged that people shared some very personal and emotional information with us in the process of this project. This does not mean they may wish to discuss such matters with everyone they meet, or that someone with a similar condition would necessarily want to discuss their situation as openly. We hope that this section encourages understanding of the benefits of telling people, but also highlights the personal and social limits of doing so.]
Difficulties of telling
We found people felt that stigmas around certain conditions or disabilities affected what some people said and to whom. Some people also said that they were reticent to speak to others as they felt they would not be believed or taken seriously. For some people, talking about their condition or disability was difficult as they were still learning what it meant to them. A key theme was that there were limits to what people wanted to talk about, depending on who the information was being shared with, how personal the information was and, the purpose of the disclosure. One example that came up in a number of interviews was that of applying for and starting new jobs, with people explaining why, how, and when they disclosed their condition or disability. Another example was how best to provide or seek offers of help and support.
Stigma, taboos and being believed
Changing identity and learning to voice your needs
© Disability NarrativesLyn found that being diagnosed with dyslexia later in life challenged her ideas about herself.
© Disability NarrativesMary reflects that it has taken time to establish how much to share about her condition.
© Disability NarrativesAt first Milembe did not want to tell people about her cancer, but as she got better she found it easier to share.
How much to share and with whom
Sometimes, people's condition or disability was apparent. As Devon explained, "I think I've been on sticks enough that [laughing] people have kind of gathered what's going on. And they know that I've had the surgeries, and when that's coming, and that when I'm gone for a long time, that's the recovery time."
© Disability NarrativesCharlotte describes what she told and to whom, and her worries about how different people would react to her conditions.
© Disability NarrativesJohn finds that it does help to tell people about his condition as it helps them understand how it affects him, but is careful about how much he discloses and to whom.
© Disability NarrativesMary explains it is not always clear who needs to know what in her college and faculty.
What to disclose in job applications and when starting new roles
© Disability NarrativesCharlotte explains how she declared her condition prior to starting her new role.
© Disability NarrativesJohn hopes that providing potential employers with an explanation of his condition helps them understand what it is, as well as explain the gaps in employment that were due to his illness.
© Disability NarrativesGabrielle explains that she had little choice but to tell her prospective and new employers about her conditions.
Offering or seeking help or support
© Disability NarrativesMaeve explains that she is open about her epilepsy with colleagues and students in case she has a seizure.
Exploring boundaries in explanation and understanding
There may be clear benefits to telling people for those with long term condition or a disability, but there are limits to what people are able to share (or should be expected to share). The people we spoke to explained how, while they may wish to take responsibility to express their needs, the (work) environment that they are in can either make this easier or harder to do. Fears or anxieties about how other people will react (drawn from personal experiences) can make it difficult to talk about personal, sometimes embarrassing, or emotional issues. Some people explained instances when preconceptions around their long term condition or disability – even when well meaning – were a boundary to developing an understanding of their individual situation and needs.
© Disability NarrativesCharlotte finds preconceptions about physical and mental illness makes it difficult to share personal information.
Preconceptions and understanding
© Disability NarrativesMaeve finds that people’s preconceptions of how epilepsy affects her can be problematic.
© Disability NarrativesAlthough John understands people’s attempts to understand his condition via comparisons with their own experiences, it can sometimes feel like they are trivialising his condition.
Some people found that other people's interpretation of their behaviour helped to minimise the impact of any actions they took to manage their condition.
© Disability NarrativesMary finds most people do not react to her standing in meetings or using a cushion for her back.