Developed by Sanofi Genzyme for a UK audience

Planning with MS: Social life



7 minutes, 33 seconds

The plan: breaking out of isolation and back to a full and happy life!

Some things in life bring you to a standstill.  In that moment, nothing works and carrying on just isn’t an option. A new plan has to be drawn up. And that’s always a wise decision. Having a plan means having priorities, taking care of yourself and setting some goals. A plan is like a sat nav guiding you through a complicated patch and helping you keep more or less on the same course. One such complicated patch is something I call one of the invisible symptoms of MS, social isolation.

MS isolates people from life itself. And there are plenty of reasons why. At the beginning, it’s often the fear of having to talk about something you’re still not quite sure of yourself. Then comes the financial loss if you can no longer work. Even people who keep their distance because they have a completely false idea about MS and are unwilling to take a different stance.

This isolation can lead to depression and loneliness for lots of people with MS. That’s why we need a plan to get out of those situations and back to a happier life. Because who – if not people with MS – doesn’t deserve a decent life with a bit of fun thrown in?

Taking stock! What’s happened?

It’s important to admit what’s happened to you, but that can sometimes be the hardest step. To admit that you’ve crawled into a shell is never easy. Support is vital – but what kind? That’s something everyone needs to work out for themselves.

Neurologists can often help with referrals to psychologists, while nurses can open up new avenues and recommend some initial tips and contacts. So-called life coaches can also get you back on track. It’s important to listen and understand which solutions might be right for you.

The important thing is that anyone you work with is trustworthy and experienced in helping people with MS specifically. That way, you’ll save yourself answering endless questions and can immediately start getting back on your feet.

What do you like? – Finding common ground!

Be honest. What do you like? Are you someone who might be interested in joining a club? Do you want to learn something new or join a community that focusses on topics that interest you? Whether it’s a book club, a sports club or a crafts club, find something that fascinates you and you like doing. You’ll often find adverts in local newspapers, on notice boards at local groups and online.  Keep in mind, some patient organisations and self-help groups have very good tips for things to do in your free time.

You can also talk to people online – if a real-life event is too much for now!

Put it this way, there’s no shortage of opportunities to socialise and interact online nowadays. There are groups, chats, forums… everything’s possible on the Internet, particularly if it’s difficult for you to get out of the house straight away, perhaps because of a lack of confidence, so don’t be afraid to seek support in others online.

It’s just important that you pay attention to what you’re posting about yourself and who you’re talking to. A healthy dose of mistrust is always good to have when it comes to finding out who’s behind the next account you come across.

But now… get out there!

As wonderful as the Internet can be, real life is waiting for you out there. And it’s exciting. Meeting up with complete strangers and taking that first step can be difficult, but it’s worth it. Once you’re clear in your mind about what interests or hobbies you have in common, the conversation will flow.

Depending on your interests, joining clubs and meetings is often free, or requires just a small donation. The women you see enjoying a local crafts club, the gentlemen playing a friendly game of chess in the park at the regulars’ table or even playing a bit of sport, all these clubs are free and getting involved is so easy.

Another exciting idea is to volunteer. Helping others can often help yourself. Whether you decide to lend a hand at a local food bank, help out in the library, walk the dogs or feed the cats in a local animal shelter, these things can often be easy to handle and lots of fun. Social contact brings new meaning to life and introduces you to new people who could easily become new friends.

Another worthy idea is to take on a joint project. Whether it’s painting, cooking, reading or chess, they will bind you together in a fun and positive way. And your MS? Hardly that interesting. You may not even mention it at first.

You need to have fun with your life and those around you! The rest will come in time. Don’t believe me? We tend to isolate ourselves, especially at the beginning, to put MS entirely in the foreground. But, as soon as we stop and follow our built-in sat nav, we can focus differently and MS takes its rightful place where it belongs: in the background.

Because life is much more fun that way!


Date of approval: July 2019

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