MS awareness week 2023: Supporting community and social connection

27 Apr 2023

Joanne found that, after her traumatic experiences in early life, she had closed herself off from a lot of friends. Following her diagnosis of MS she retreated even further from both friends and healthcare professionals.

'I didn't have a proper job anymore, I didn't think I had anything interesting or valuable to say.'

Joanne was signposted to some local support groups and mental health charities where she became part of a community. She acknowledges that sometimes, the last thing she feels like is socialising, or opening up, but that at these times, it's often the most beneficial to her, and she will push herself to connect with someone or to support someone else who needs it.

'Social connection is one of the most important things with any illness. If you isolate yourself because you think people won't understand you, you're not giving them a chance to understand - you're missing life.'

Joanne also shares the importance of being able to talk to other people who share some of the same experiences and challenges as she does. Prior to the last few years, she spent a lot of her time avoiding others with MS because she was scared of seeing how MS affected other people. Now, she sees the benefit of having others to talk with and ask questions of.

'Being referred to some local groups was really good. Sometimes you don't want to bother the doctor; it's good to have a group of people as a sounding board, who can say, 'Ooh, yes, I had that…' or 'Actually, it sounds like you should talk to your nurse.'

5 ideas to support community and connection:

  1. Suggest an online community, especially if someone is newly diagnosed or wary of meeting others. shift.MS might be a good starting point.

  2. Signpost to local group meetings, like MS Society or others specific to your area

  3. Some groups are specific to a set of interests. OMS Circles might be good for someone wanting to make lifestyle changes to support their health and MS.

  4. Set up a 'disease-modifying lifestyle' clinic or newly diagnosed group session for people on your own caseload

Start a monthly coffee morning, like the one set up by MS nurse Bhavani (p23).

#MSMakesMe connect with others and support them in turn

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