Making best use of the MS community
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Quality of Life · Article
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 cared for and supported. And if you are living with multiple sclerosis (MS), finding a community that makes you feel welcome and supports your journey with MS is particularly important.
Read on to discover how you can 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 go over 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, care partners, and healthcare professionals. However, joining a new community and openly talking about your MS with others can be intimidating, especially if you’re not used to communicating online.
If you’re feeling a little nervous, start as an observer by 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 waters to see which social media platform or forum you find easiest to use.
Local MS community
There are also plenty of in-person communities to discover, such as local MS support groups and meet-ups. Whilst some events have become virtual due to COVID-19, it’s worth seeking out live events where you can connect and engage with others face to face. Through your local 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 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 an 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 with other members of the community has been a lifeline.
It can be difficult to know where to start when joining the MS community. If you’re a little apprehensive, it’s important to remember that the MS community is here for your benefit. So don’t feel pressured to join a group or participate in a discussion if you’re not ready. Instead, take your time and connect with others in a way that feels comfortable for you. Here are a few tips to help you get involved:
Engaging with the online community can be a good start
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 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
Write about your experience 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 about 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 of it. 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.
