How to set up and run a Fibromyalgia Support Group
By Julie Barker
How willing are your members to step out into the unknown and do something new? Let’s set the scene, you have received an invitation to a networking event at your local volunteer centre. You open the invitation up to the group members and they look at you in shear dread, stating that they don’t know what they are doing, they can’t talk to strangers and they don’t know how the group runs. You don’t feel well enough to go alone, so you politely decline and miss out on a range of opportunities that could have benefited your group.
How do we encourage our members to volunteer at networking events without them feeling out of their depth?
First, we need to clarify that we are all networking everyday with our friends and family, by just talking to each other. We know it as socialising. Simply asking how someone is can start a conversation that can lead to a life-long friendship or an opportunity, just like at a social gathering where you are introduced to more people and you strike up conversations. This could lead to a wider friendship circle and even more opportunities. This is networking at its simplest level, and we are doing it without even trying, because it’s in our nature to talk to others and have a good gossip.
If we find ourselves isolated with our illness or living alone, not having that interaction can cause a barrier in talking to anyone apart from essential services. We lose our self-confidence and, with the lack of social activities in our day-to-day lives, it makes it increasingly hard to strike up a conversation with a stranger. This especially includes walking through the doors of a support group for the first time. However, when you do finally find the courage to attend the group, you get a warm welcome and a stranger sits next to you and asks how are you today? This just maybe the start of that life-long friendship or opportunity!
Why is networking essential?
Networking is vital for our personal and professional growth. It helps build reputable connections on all levels. Networking on behalf of your support group can open a wave of opportunities from a new referral source to funding and partnership working.
If your members enjoy coming to the group, they are going to talk about it to a family member, carer or a stranger in a queue. There is no difference to a stranger walking up to your stand and asking for more information about the group. The member can talk to them of his or her experience. The stranger would be able to get first impressions from a ‘service user’ without any cold sell. The volunteer could always plan and write a short list of key points as a prompt and hand out leaflets with more information.
Visual Assistance
I have decorated our awareness stand with the story of the group. I have sectioned it off and colour coded it along the same lines as the 5 ways to wellbeing. In the different coloured areas, I have put photos and logos of who we connect with, what activities we do and all our upcoming events. So, if any of our volunteers find they are having a foggy moment, they can take visitors to the stand and follow the board.
“Networking is not about collecting contacts, it’s about planting relations”.
Mishaat
Networking can strengthen the group’s connections. Other likeminded groups often look for pro-active groups to collaborate with. A good example would be attending your local small volunteer group network meetings with your local volunteer centre. You can spend a couple of hours with experienced staff, informing others about what your group does, sharing ideas and exchanging information. As you become familiar with the representatives of other groups that attend, you can help each other towards likeminded goals and build a trust. It prevents your ideas and the group from becoming stagnant and it helps retain your members.
Step outside your comfort zone and your comfort zone expands.
Attending meetings and networking events helps you gain access to new funding pots, the latest legislation and training courses. Making this part of the group’s ethos and meeting new people on a regular basis will build the confidence of everyone in the group. It makes you step outside your comfort zone, which in turn will build your self-confidence and invaluable social skills. The more you network, the more you grow, the more the group grows.
Seeing familiar faces in the same networking circles can build long-lasting personal friendships, both professionally and voluntary. I personally rub shoulders with many people I knew when I worked for Sporting Futures as the Volunteer and Mentor Manager in the mid 2000’s. From these friendships forged as a professional, I have had doors open to support and new opportunities as a volunteer. Kev Hatton helped me start Fibro Active, Kay Smith has mentored me through all the events we hold, Laura Mayes has donated gifts for raffles from Derby County Football Club, Richard Kay chose Fibro Active as a ‘chosen local cause’ at the Wilne 10K, at the time I was the volunteer coordinator for the race, alongside Kay Smith. We have all moved on from Sporting Futures but because of the friendships we forged, the trust we gained and the quality of work we did and still do, we have supported each other altruistically.
Furthermore. My role at Sporting Futures meant that I was networking regularly at Erewash Voluntary Action, so I had already established relationships within the team. The connections become more widespread and the world gets smaller. Jane laughs at me because I always take the opportunity to talk about the latest things we are doing at group. We could be in the supermarket and have a chance meeting with a connection, or in the spa where I can join in a conversation that has caught my ear. Every opportunity could lead to something new.
“The currency of real networking is not greed but generosity” Keith Farrazzi
Networking within the Fibro community has so many benefits. If a group doesn’t have a proactive and knowledgeable leadership team and it remains isolated from either a larger organisation or other groups, it may lose its strength and purpose; whereas, regular contact with a national organisation or other groups ensures that you thrive together.
Through sending our group report to the UK Fibromyalgia office, I was asked to write articles for this magazine and that in turn it has exposed Fibro Active to a wider audience. It has also introduced our group members and me to the magazine, so gaining current information from a reputable source.
Furthermore, it has created connections that we didn’t have before like the Chesterfield Fibromyalgia Support Group and Fibromyalgia Action Group Nottingham. One or two of our members are also members of these groups. But the networking circle doesn’t stop there, Tina Morris who runs the Nottingham group is also a fellow Tai Chi instructor. Keeping to the subject of Tai Chi, Lisa Dengate is a fellow Fibromite and Tai Chi instructor who runs classes in South Derbyshire. She connected with us through an enquiry from South Derbyshire NHS Trust which is looking at starting a support group in that area; it was our Strictly no Falling coordinator Jo Briggs who put us in touch.
Looking at the connections at this level you could say it is all about who you know, not what you know. Of course, that has a part to play, however, it’s not about the quantity of people you know, it’s about the relationships you create within your network and what you can give to the network to help strengthen it and allow it to grow.
We now have come full circle. We have identified the trust that is gained and the confidence that is built by the individuals within the network. It will forge long friendships and boost your group’s reputation. We are all in this together for life. We should be working as a collective to raise all our profiles and light a beacon for the 1 in 20 of us. Just think, your next opportunity could start by someone simply asking; how are you today?