Developed by Sanofi Genzyme for a UK audience

The importance of networking with MS



6 minutes, 51 seconds

The world is a village, or so says the theory of the ‘small world experiment’ made famous in the 1960s. Researchers claimed that everyone is connected to one another through various pathways, also known as ‘six degrees of separation’.  And they weren’t wrong. I’m a passionate believer in networking in all walks of life, whether with experts or just other really good people. It simply works.

When I got my MS diagnosis, it was clear to me that I wouldn’t be able to achieve much alone. I simply knew too little about the disease and how to live with it. But as online technology developed around 2005, I began using various new channels to establish a network based around MS. This network offered guidance, support. Somewhere to discuss MS with other people and help me learn all about it. At the same time, I threw myself into self-help groups and their online forums and began communicating, working my way through dedicated groups on business networks, gradually finding other people living with MS. I built up a network of people living with MS, experts and other people with illnesses, getting the information I was looking for, and needed. Something I still need today.

Now, things are a lot easier. The choice on offer has become a lot more diverse. There are social networking sites like Twitter and Facebook, as well as people with MS writing their own blogs, plus organisations have websites with places you can talk and a whole lot more.

But the thing about networking is that it isn’t always straightforward. It’s important to make sure you’re networking with the right people in the right places. You need to pay attention to what you’re discussing and what you’re sharing, particularly in publicly-accessible places. Not all corners of the web are ideal. A healthy dose of mistrust when networking is always important – and necessary. Never forget, the people you talk to online are ‘virtual’, so not always entirely visible and that’s why you have to take such care.

And not everything online is good for you, which is why you need to pay close attention to what you’re doing and surround yourself with people who are good for you and genuinely helpful.  It takes time to build up a network and nurture it. Like precious treasure, they need to be cared for, helped and supported in various ways.

But when you put a question out there, you’ll often get good answers back. They’re always in there somewhere. Either someone will be able to help you directly, or else they’ll know of someone who can. When your doctor is unavailable, for example, you can often reach out to someone to provide comfort or reassurance, sharing their advice until you can get an appointment. Need a phone number for a good physiotherapist? Just looking for someone to talk to? Ask your network.

Within networks, a great deal of knowledge is transferred, so it’s important to try to give something back. Meaning sharing. Whether it’s about your MS, travel tips, careers advice or how to get into a certain industry, how to get the housework done or explaining MS… information can be shared reaching as many people as possible.

Life within any network is shaped by give and take – everyone has something that somebody else wants or needs. So that’s how I go about my life. It’s helping myself through self-help, motivation and sharing knowledge.

And there’s also a significant social aspect. Networks create a certain closeness. For a lot of people with MS, it’s that closeness to others and our social lives where, sometimes, it can be hard to participate so easily. Networking is about participation and inclusion, where those who are immobile can still get in contact with others and communicate.

In the past, I’ve found many friends online. People I no longer want to live without and who I know I can rely on if I need help. Lots of them are also living with MS and other illnesses, so we’re all trying to help each other out. Patient networks can be stronger than anything else, and knowing that they’re there has often given me much-needed comfort.

Incidentally, ‘The World vs MS’ is also part of the networking community. Here, you’ll find lots of great people who motivate, inspire and communicate. Maybe they’ll inspire you to set a goal, just drop by:

Creating a network is like a tiny spider building its web, it takes instinct and time. But it’s worth the effort. You no longer have to know everything yourself, and knowing people who can help is always a good backup. 😉

So, are you part of a network of helpers and supporters?


Date of approval: September 2019

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