Making best use of the MS community
Community is incredibly important. Being part of a community and connecting with other people can give us a sense of belonging and helps us to feel safe and supported. However, the COVID-19 pandemic has made it particlarly hard for people to connect. With fewer opportunities to meet others and limitations on who you can see in person, many people have been left feeling isolated and alone. And this can be particularly hard if you are living with multiple sclerosis (MS).
But you don’t have to feel this way – read on to discover how you benefit from the growing MS community of people who can relate to each other and their experiences, and offer one another support.
You may be wondering where to start when joining the MS community. To begin, let’s talk through the different types of MS community that are out there:
Online MS community
Found on social media, forums and patient advocacy group (PAG) websites, the online MS community is highly active and full of MS patients, carers and healthcare professionals, facilitating for over 2 million people living with MS worldwide. It can be daunting stepping into a world full of discussion about MS, especially if you’re not used to communicating online.
If you’re feeling a little nervous, start as an observer, looking at what is being posted online and reading what people have to say. Then join the conversation when you feel ready. You can also test the water to see which social media platform or forum you find easiest to use.
Offline MS community
There’s also plenty to discover offline, such as local MS support groups and meet-ups. Whilst it’s likely that you’ll find it more difficult to meet and connect with others given the current COVID-19 situation, it’s worth keeping an eye on this option for the future as it can have huge benefits. Through your offline community, you can meet up with other people nearby who, like you, are living with MS.
Your personal community
Let’s not forget your personal community, a support system made up of your family and friends. These are the people who know you best and who you can rely on the most to offer both practical and emotional support. You might also consider your neighbours or co-workers, who you can really rely on for help if you need it, to be part of your personal community.
Engaging with and becoming a part of the online MS community can offer you many benefits, helping you to feel well supported on your journey with MS. The possibilities are truly endless and for many people living with MS, having the ability to communicate and connect online with other members of the community has been a lifeline. And with the ongoing situation with COVID-19, the community online has now become more important than ever.
It can be difficult to know where to start when joining the MS community. One way of getting involved is to choose a social media platform that you enjoy using and set up a dedicated account specifically to interact with other patients, carers, healthcare professionals and PAGs. If you’re a little apprehensive, you should know that there are endless benefits to connecting with others online.
Firstly, you don’t have to leave the house to gain moral support, receive advice and empathy from others who have lived through similar experiences, or to create new friendships. Engaging with the online community is also a great way of combatting loneliness, particularly if you live on your own. There will always be someone willing to listen and offer support to you when you need it. And let’s face it, we all need somebody to lean on every now and then!
"I find the MS community is such a wonderful support and has really helped me through dark times!"
Hannah, Living with MS
There are many people living with MS who document their MS journey for others to follow. This can often prompt conversation within the community about certain topics and can help others realise that they are not alone. Writing your MS journey can act as a creative outlet that you can turn to and enjoy in your spare time. It can also help you to reflect on your symptoms, making it easier to talk about your MS at appointments with your neurologist or MS nurse.
“I use Twitter a lot as I can ask a question or whinge about something and have twenty replies within minutes. The support I’ve found has seen me through many difficult times.”
Jacobo, Living with MS
If there’s one thing to remember, it’s that the more you put into the community, the more you get out. So get involved! The MS One to One community is active across Facebook, Twitter and Instagram, so it couldn’t be easier to join us.