Connecting and sharing with others can help you gain shared learning and help with worries over the future. Some people with MS find the prospect of meeting others with multiple sclerosis (MS) scary. Some are concerned about their own fears of the future. Seeing or meeting a person with more advanced needs can feel daunting, as it may unsettle deep-seated fears for the future. These are very normal thought processes, and it can be challenging to open up to new people. There is lots of evidence that gaining or giving peer support can help people thrive whilst living with a long-term condition.
There can be value from being part of a peer support network. There is evidence that peer support can help people feel more knowledgeable, confident about their health, and less isolated.
There are many ways to gain peer support, whether face to face, over the phone, or online, with the availability of a variety of social media platforms, forums and online support groups. It has never been easier to connect with others.
We think getting support and finding somewhere that you are comfortable is most important. It may be worth keeping in mind that many of these social media groups will be set up informally and run by members of the MS community on a voluntary basis. Research has shown that peer support is most effective for improving health outcomes when facilitated by trained peers or experienced professionals.
MS-UK have a peer support service offering the opportunity to connect and chat with other people affected by MS. These are small online (Zoom) groups called peer pods which are facilitated by trained volunteers (also people affected by MS). There are gender specific groups, a newly diagnosed/ready to talk group, a group about MS and work, weekly drop-in sessions and a group for family/unpaid carers.