When diagnosed with a condition that isn’t commonly known it can leave you feeling isolated and lead you to thinking you are the only person in your area with this diagnosis, which may not be the case.
Reaching out and meeting up with fellow people and carers who understand what you are going through can be …
- an opportunity to socialise and make friends
- a place to get advice from others
- an environment to give each other emotional and moral support
- an opportunity to engage in activities which you may feel uncomfortable doing on your own
Here are some tips on how to arrange a meet up in your area:
Consider where you would like to advertise your meet up
Online groups and forums are the best place to do this so you could approach an admin of the group/forum and ask if you would be able to post your meet up invitation. Bear in mind, especially with groups/forums with a large number of members, your post may be missed so keep commenting on it now and again so it shows back as a recent post.
Consider the best place to have it
Somewhere public is recommended for your first meet up, for example a coffee shop or pub. If there is to be a few of you perhaps look at hiring a room somewhere, like a church hall, as sure others wouldn’t mind contributing to the cost if there is one. Make sure you check beforehand the place you choose is disabled-friendly.
Choose a date yourself and invite people along rather than trying to negotiate a time that will suit everyone
Finding a date and time to suit all can become difficult. If someone can’t make this one there’s always next time.
Update everyone on how the meet up went
This is a good way to share what you got up to and lead on to arranging your next meet up. It’s also encouragement to others that may have been hesitant to attend.
Most of the time you would have engaged in conversations with people you are planning to meet and this wouldn’t need considering, but it is important to bear in mind, especially for your first planned meet up.
In addition …
FND Dimensions is a charity that has been set up by a group of people who have been diagnosed with FND. Their aim is to bring those diagnosed with functional neurological symptoms together in their local area, to talk and listen to others with similar challenges, issues or concerns. Likewise, it can simply be a social gathering where you do not have to feel inhibited because of your personal circumstances. FND Dimensions Information Flyer
FND Friends is a charity that has been set up by a group of people who have been diagnosed with FND, to create an active support group where you can meet, share experiences, and pass on ideas. For those in the Bristol, South Gloucestershire and North Somerset regions, please do visit the FND Friends website to keep up to date with forthcoming events/meetups.
East Midlands – NEAD Notts is a group who meet up every month, for those with NEAD and FND to come together with others in the same position. See their Facebook group for more details.
Scunthorpe coffee and chat – Epilepsy Action is a group that meets up every month, where people with Epilepsy and seizures, including NEAD, can come together to socialise with others. See their website page for contact details, location and dates.
If you would like your group advertised on this page, please use our contact form to get in touch with us.