The current situation for young people with MS in the early 20s or under-18, is urgent.
We know this is a formative stage of life, I know that support post-diagnosis has the potential to impact positively or negatively, the next 50-70 years of life. When diagnosed we’re are presented with awful news. It is how we deal with it, the support we get and the expectations from those around us that will influence our choices and how great our life will be. As the good folks at ShiftMS say, MS doesn’t mean giving up on your ambitions, just reimagining how to achieve them.
Dublin MS Meetup Group
I started the group in March 2010; I wanted to connect with other people with MS, particularly those who were of similar age/life stage as I am. From day-to-day management, diet, fatigue, medication, medical professionals, relationships, coping strategies, treatment information…we talk about all of this and none of it too. Essentially, it is about meeting other people, making friends, sharing experiences and building relationships of solidarity with people who understand what we might be going through without having to explain every little thing about our MS.
The group meets every month in the IFI Cinema in Temple Bar, Dublin, on Saturdays around noon. There’s a Meetup page for the group (http://www.meetup.com/Dublin-Multiple-Sclerosis-Group/. People sign up to it and see the details about the dates and times of Meetups, make suggestions and share information. We alternate in terms of those who host the meetup.
I’m shy! Meeter Greeter for newbies
An important aspect of the group is the Meeter Greeter- someone to meet before the general gathering. This makes it easier in terms of feeling welcome and getting to know people.
Usually I facilitate the group (in as much as a group of adults need) and we are very mindful of the need to ensure it’s a safe space for people to express themselves, to be heard and to be listened to. It is also a place to enjoy the banter and the company of others!
Get online and connect
Shift.ms is an online forum for people with MS and is particularly aimed at young people. I have searched and there are a number of people under 18 on the site that I would encourage young people with paediatric MS to connect with.
Connecting with other people is a great way to discover and replenish your lust of life in those early days post-diagnosis.
© Emma Rogan 2017