Multiple Sclerosis: friends & family experiences

Looking for information on MS

When a person is diagnosed with a long-term condition, information is often seen as vital to understanding the illness, how it might develop and how people might cope with it. People have different needs for information at different times and the relatives and friends we spoke to varied in the amount of information they wanted, where they preferred to look for it and how active they were in trying to find out about Multiple Sclerosis (MS). Some wanted to ‘know everything,’ and were very active in looking for a wide range of information. Others, partly through fear of what they might find out, were happy to trust that health professionals looking after their relative, ‘know what they’re doing,’ and felt that they didn’t need to know too much.
People used information in different ways but mostly with similar purposes-to improve the life of the person with MS and their own life. People looked for, and found, information about how to manage symptoms, what to tell people, about new medications and treatments, about how to access facilities, aids and adaptations, about finances, dealing with employers and legal matters. As Kay Z said, ‘You needed advice on everything.’

Sources of information were varied and included books, newspapers, magazines, the internet and other people with MS who they had met at support groups, therapy centres or conferences. Charities such as the MS Society, MS Trust, MS Resource Centre were all considered to be valuable sources of information for their websites, publications, newsletters and forums. Some people spoke of getting information from health professionals and sometimes they were seen as the most reliable source.
A few people read scientific research papers and a couple used social networking on the internet. The MS Society was the ‘favourite’ source. One or two people mentioned contacting the MS Society, either by phone or internet, ‘straightaway,’ and for some it was definitely the ‘best place’ to get information.

Lots of people we spoke to used the internet to look for information about MS, but not all did, and among those who did, some used it more than others. Many used it to access the MS Society, MS Trust and other health-related websites. Some also used the internet to look for information about applying for benefits, researching the best type of wheelchair or adapted car, or home improvements. 

Reasons people didn’t use the internet were that they found the information ‘scary’ and didn’t want to know too much, or they simply didn’t have enough time. Some people weren’t interested in computers or they weren’t very computer literate at first; Louise Y increased her computer skills and then used the internet a lot. Some people warned of information overload or of misinformation on the internet. Karl and his partner used the internet but they were also ‘wary’ of it.
Availability of information has grown over time. For people diagnosed a long time ago, there was little access to information. ‘When anything crops up now,’ John X says the first thing we do is automatically go and look up and see exactly what the situation is. The worst thing, at the time, was that there wasn’t information.’ Before the internet, teenagers who were caring for parents with MS relied mostly on the other parent for information about what was happening, but they didn’t always get it. Even in recent years, some people have found that they weren’t given enough, or any, information at the point of diagnosis. Betty said, ‘The onus is on you (to find information) and that’s wrong.’ Sometimes it was difficult to get concrete information about what lay ahead because, unlike some other types of illness, each person’s experience of MS can be so different.
People talked about having a different approach from their partner. For some couples, the person with MS was more active in looking for information, but for some it was the other way round.
Social networking on the internet was important for one geographically isolated person and for one young person. Mike talked about getting information about MS (while trying to avoid ‘information overload’) and also about his involvement with an MS network called, ‘Shine on Scotland.’ Through social networking about her own experience of growing up with a parent who has MS, Sarah contributes to raising awareness about MS and to creating an identity for young carers.
For some people, having information was a source of power which helped them to get what they needed. Having met hundreds of people with MS, Ray concludes that, ‘The more you know about it, the more you can defend your corner.’

Last reviewed July 2018.

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