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Finding MS Support and Community Online

Reading time | 5 mins

When I was diagnosed with MS ten years ago, all my non-clinical support (i.e. not from my doctors) came from face-to-face interactions, telephone conversations or from paper-based publications. Support groups and information events were attended in person and I would call up charity and patient association helplines to chat with someone who might have answers. These days, my life is much more digital. Online support has become a huge part of helping me to live with MS. But it can be daunting as there are so many options out there!

What do I look for in online support?

Of course everyone wants different things, but in my experience there are some broad questions that you should ask yourself:

Will the support network meet my needs?

I ask myself why I want to access support? What do I need to do to get the most of it? Often support is a two-way thing. Not every type of support network is going to be right for me or my particular circumstances, so I need to find the ones that are.

Will I “fit into” the support network?

Here I look at whether a support network is broadly aligned with my views and if I will be able to have conversations with people about things other than MS. Just because someone else has the condition doesn’t mean I’ll automatically get on with them! Sometimes it makes a difference to be able to chat with people who are similar to me in age, outlook and background because depending on why I need the support, they may better understand where I’m coming from.

Will I be respected and valued, and is there confidentiality if necessary?

I want to know that my opinions or questions are going to be respected and that if I’m chatting to people in a “closed” group that there is some confidentiality involved. Obviously, I’m aware that nothing is really confidential once it’s posted online, however, I want to know that some sort of “best practice” is being followed. I’ve previously had to leave a Facebook group for people with MS because of cyber bullying. So I always make sure that I know how to leave a group, who the administrators are, what the rules of interaction are and what to do if things become difficult.

Do I have enough variety in my online support networks?

They say “variety is the spice of life” and online support is no exception. The sheer number of options available means that I won’t necessarily turn to a single place for all the support that I need. Some of my support networks are very specific, others are more general. They all come together to provide me with balance

Where can I look for online support?

Social Media

This is the biggest source of online support for me. You can access support groups, see people’s vlogs, interact one-to-one with people affected by MS (or other chronic illnesses) and say as much or as little as you like. On Facebook alone there’s groups for women with MS, people with MS from different countries, people who work and have MS, and people with MS who like to exercise. And those are just a few! Hashtags that I’ve found particularly useful include #MultipleSclerosis #MSWarrior #MSFighter #WeHaveMS #Spoonie #SpoonieFamily #SpoonieProblems #ChronicIllness #AutoimmuneWarrior #InvisibleDisabilities

Virtual communities

These include communities like Shift.MS, Patients Like Me, SMSocialNetwork (Italy) and talkHealth (UK). They often provide a hub where you can find information and have the chance to connect with people from all over the world. Many have “Ask the Experts” sessions either live or by video. With Shift.MS you can even plot yourself on a global map and find other people nearby. Some of the national MS societies also run forums and virtual networks.

Blogs

I love reading and online is no exception. There’s many MS bloggers out there who are sharing their experiences of living with MS. They might run their own blog or, like me, might do guest blogs for different organisations and platforms on various topics. There’s even an MS research blog that I find incredibly helpful for learning about what’s happening in the “scientific” world of MS and being able to interact with academics, researchers and neurologists. Blogging is a great way to see the “real” face of MS, as often it’s an open diary about people’s journeys.

Podcasts

These are great for listening to as an alternative to having music over my headphones! They often have interviews with people involved in the world of MS, whether that’s because they’re someone who has it, they’re a carer for someone with it or they’re a professional helping people with MS. Some that might be of interest are: FUMS: Giving Multiple Sclerosis The Finger, RealTalk MS and Truth Be Told MS.

Information

It’s not just experiences that I get online but also information. This can range from finding things out about MS itself and any treatments and or/tests I may need to have, to finding out what my employment rights are as someone with MS who is working full-time. What’s important to me is that I know that the information is from a reliable source (there’s lots of misinformation and ambiguity out there!) and that it’s pitched correctly for my level of health literacy. But that’s the beauty of searching for information online – there’s so much out there that you’re bound to find what you’re looking for.

How does going online benefit me?

Well it’s simple really. It opens up a world of choice. Choice of how, when and to what extent I want to interact. Plus, online gives me access to much wider possibilities – I can interact with people from all over the world in a way that wouldn’t otherwise be possible. I can access information that I wouldn’t have access to if I was relying on paper-based sources. If I want, I can be very active online. If I don’t, I can be “quieter.” It’s entirely up to me. I can also read through archives of conversations that may have happened in an online support group, which wouldn’t be possible with face-to-face meetings. And, online I can be “anonymous” if I want. All of this helps me live in a more positive and supported way with my MS!

Useful links

UK/MED/18/0303 October 2018