Multiple Sclerosis: friends & family experiences

Deciding whether to tell others

When someone is diagnosed with a condition such as Multiple Sclerosis (MS), there are decisions to be made about if and when to let other people, including friends, family members, employers or work colleagues, know about the diagnosis. Some people we talked to told others immediately, before thinking through who they might tell, and how. For others there was a delay as they considered who they might tell and what would be the benefits and drawbacks of telling. Almost all decisions about who to tell, and how, were based on thinking about what people needed to know. Deciding that somebody needed to know was generally the trigger to tell them. Sometimes the person with MS didn’t want anybody to know and friends and family talked about the need to respect their wishes, even if they found this difficult. Commonly, people did not want to be labelled or pitied and wanted to be treated as normal. Stella’s partner, for instance, was keen not to be ‘branded as a sick person’.
Stella remembers that her student confused MS with ME (myalgic encephalopathy, or chronic fatigue) and others remembered getting a similar reaction. 

Even if people do decide to share the diagnosis with family members and friends, they may be selective about how they do it, and this was something the person with MS and their nearest relative might discuss together. 
Another big decision for people with MS is whether to tell their employer. Close family were often consulted about this decision.
Close relatives also have to consider whether to tell their own employer or work colleagues. Sarah Z didn’t have to think too much about this: she went straight back to work, after being with her husband to receive the diagnosis, and told the head teacher at the school where she worked. Others have chosen not to tell people they work with for the moment, for a variety of reasons, but say they might do so in the future.
Ray and his wife jointly decided not to tell anybody about her diagnosis at first, mainly because they knew so little about MS that they didn’t know what to say about it. After some years they decided to be open about it. Ray thinks this helps to inform and educate people about the condition.
Sometimes the person with MS had a different approach to telling from their partner. Stella felt it was ‘a real big relief’ when her partner decided to share information about his diagnosis. Anthony has ‘never fought shy’ of telling people that his wife has MS. But he thinks that, at first, she didn’t want to admit it to herself and so didn’t want to talk about it. As she has grown to accept her condition she now has no problem telling people about it and this, Anthony says, has made things easier.
The experience of young people and teenagers living with a parent with MS can be somewhat different. Carole and Anita both felt very isolated. Nobody around them talked about the diagnosis or about life with MS and neither did they. Carole’s friends knew, but they didn’t discuss it. Her school only found out when they called her father to try and find out why she was so distressed one day by a simple wasp sting. Even then no-one from school came to see her to talk about it, but she thinks that would be different these days. Anita’s teachers never found out about her mum’s diagnosis and she didn’t talk to her friends about it.

Last reviewed July 2018.

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