Sadly, there is still a misconception among some doctors that people interacting with others diagnosed can have a negative impact, and people are frequently deterred from using online support groups. It has even been said to some that talking to others may lead to the development of more symptoms! This misconception not only leads to a person wrongly feeling that they are able to control their symptoms, but also diminishes the key reason why they have sought help in the first place – they just want to get better.
Through FND Action’s experience of managing and interacting in online support groups, and meeting up with others diagnosed in the community, it is evident that peer support can be vital to a person’s needs, long-term recovery and symptom management.
Peer support groups take on different roles depending on a person’s circumstance. For instance, newly diagnosed people may want to learn more about their symptoms and find out about things which have helped others. Some may want to know where they can go for help because they have been discharged from hospital with very little information. Some may need emotional support from others who will not judge. Some may need long-term support due to their personal circumstances. Many will join support groups and then move on, but perhaps pop back every now and again if they have a relapse or to bring hope to others by sharing their journey.
Most importantly – people want, and need, to know they are not alone.
In addition to online support groups, meeting others face to face has an added benefit of reducing the feeling of isolation with knowing there are others close by who understand and can support one another. We were delighted to see the charity FND Dimensions emerge in December 2016, and become the first of its kind to focus on setting up and facilitating meet ups for those diagnosed across the UK.
Their mission includes developing a platform for patients with Functional Neurological Disorders to come together, diminish the feeling of isolation and link with others who face similar day to day challenges.
FND Action will be working in partnership with FND Dimensions, not only to develop a stronger FND voice, but also ensure people diagnosed never have to feel that they are alone.
To learn more about FND Dimensions please visit their website fnddimensions.org and join their Facebook Group to find out if there are support groups in your area, or even receive support and training to set one up yourself.
As a final note, it is important to be aware of …and very encouraging to see… that more hospitals are now setting up support groups and workshops as part of their treatment programmes. FND Action endeavour to continue to support, interact with and promote these services.