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Primary progressive MS exposed Maintaining social relationships

Everyone recognises the importance of human contact, having good family and social networks and something to look forward to is central to our sense of wellbeing. Although some casual acquaintances and friends may drop out of your lives if it becomes increasingly difficult to do things together, the people who are most important to you are likely to be supportive and remain good friends.

One of the joys of the condition has been the kindness and consideration I have received from so many people. Amazing!

Jane, Leicestershire

You just have to work round the disability; our friends have been very supportive.

Glynis, Lancashire

It is important to remember that there is a poor understanding of MS amongst the general population, so people tend to make assumptions about what a person with MS can and can't do. Learning to ask for help when it is required, or how to decline offers that aren't needed tactfully, can be a skill in itself. You may also want to develop strategies to deal with unwanted or intrusive questions, or to acknowledge your limitations in a way that you feel comfortable with.

Lurching in to a gathering on a rollator, I am the spectre at the feast. They all want to help or feel sorry - I just want to blend in unobtrusively.

David, Leicestershire

I hate friends asking if I'm alright, can I manage? Treat me as normal - I'll tell you if I can't or don't want to do something.

Rosemary, W Sussex

Consider disclosing hidden symptoms such as fatigue to friends. Constantly turning down last minute invitations to social occasions might mean the invitations eventually dry up, but if your friends are aware of the impact fatigue has on you they may not only be more accepting if you decline or pull out at the last minute, they also might consider giving you more notice to enable you to conserve energy so you are more likely to be able to attend a night out. Don't forget you can also suggest doing something that is easier for you to manage, for example if going to your favourite restaurant is proving difficult, maybe you could invite everyone round for a takeaway instead, or if you have enjoyed long walks in the past suggest a route that is more accessible for you so you don't miss out.

I really miss walks with friends. My MS limits the sort of things we can do together. Yesterday four of us went to the beach and the other three had a long walk without me - we all felt it.

Alan, Highlands

Sometimes I'm sad at what I no longer have, but this is balanced by being able to enjoy the slower, simpler things in life.

Janet, Worcestershire

For many people being diagnosed with a long-term condition such as primary progressive MS provides them with an opportunity to reassess or reflect on their life. Although it invariably means life may not turn out as you had planned, you may find that it makes you more self aware. It can give you a chance to focus on the people and things in life that are most important to you. Your appreciation of your relationships with both family and friends and the smaller things in life may be enhanced as a result of your diagnosis. It may give you an opportunity to change career path, live life at a slower pace, try a new activity, or make new friends and acquaintances.

Next page - Final thoughts