The Benefits of Attending a Support Group

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In this article we will be revisiting the benefits of accessing the support and information from support groups to help you rekindle your motivation.

It’s been a funny sort of year. Being in lockdown, the government stating if you go outside you may catch the virus and could die. Then after all the weeks of shielding and isolation, you are just getting used to the new norm and the safe four walls of home, when the government states it’s ok to go out, but you must wear a mask, wash your hands regularly and still keep your distance. For a lot of people, it has been an upsetting, isolating and confusing process. However, not all of us made it, those who have, have come out the other side into a different world. It has changed us. Our anxieties are heightened when people get too close, we are cautious of where we go, the way we do things is different, queuing to get into shops, booking a table in a café; now only a few support group members can meet in the community halls.

We don’t know how long this will go on for and it has taken a lot of planning from different agencies and governing bodies to get us all to this stage. The changes can be very daunting for everyone, especially with the threat of more Covid19 spikes and probably a second wave.

Connecting with Zoom

You are under no obligation to attend any face-to-face meetings with your support group until you feel safe enough to do so. Many support groups are changing the way they meet on a semi-permanent basis. A lot of us have discovered Zoom and other online video conferencing.  It has made life easier for members to just click the link and add the password and you are suddenly talking to family and friends. It’s great for committee meetings and networking without having to use up half your spoons traveling to venues for meetings. However, it’s also a great divide for members who do not want to use Zoom or don’t have the technology to connect.

Transitioning with options

Currently, we have divided the programme into two, to accommodate those who are shielding and are not yet ready to come out and those who do not use Zoom and want to be out. Even with these options in place we still have lost a good proportion of our full members; moreover, I am worried that members who have the option of Zoom will become too comfortable in their homes and not make the effort to attend face to face meetings; but then we can widen our reach if our Zoom sessions become part of the programme.

We are watching the current situation carefully and although most of the groups who also use Petersham Hall are looking to return in September, we are looking at holding off until at least October, weather permitting. We are under no illusion; it will be like starting the group again and I think we will have to remind everyone of the benefits of accessing the group.

Remember the warm welcome

Remember your first-time walking through the doors, feeling anxious and worried about other’s judging you?  But 2 hours later you walk out with a huge smile on your face, relieved and excited that you have finally found a group of people who understand you. We want you to feel like that again, but we may not see your smile for a while because it will be hidden behind a mask.

Building meaningful friendships

Having that sense of belonging, along with something to look forward to improves your overall mental wellbeing. Creating new friendships with like-minded people helps reduce social isolation and builds self-esteem. After not seeing some of my members for 3 months, I was surprised how much they meant to me when I saw them face-to-face again. We all picked up where we had left off and that’s a sign of unconditional friendships. OK, you can see people on Zoom, but there is still that divide and distant feeling you don’t get when you are face-to-face.

Motivation buddies

Taking part in activities such as Tai Chi is fun, it lifts the spirit and it builds confidence. However, not everyone can follow Tai Chi over Zoom and some would prefer to do it in person. I had noticed a few weeks into lockdown that our group members slowly dipped out, or didn’t join the meeting until after the tai chi - it’s not like they had somewhere else to go! The odd session is ok, but then it becomes too easy not to join in. Some member’s symptoms were increasing and they were starting to become unmotivated at home, whereas we were getting nearly 20 people attending every tai chi session in the hall. There would be laughter, banter and energy and of course learning! It is easy to see the instructor in the hall and we were all together, it didn’t matter what we looked like or how frustrated we got when we couldn’t remember the routine; it was all part of the fun.

Even though our emotional support sessions have been an integral part of getting us through lock down, there is nothing like the anticipation of sitting around a table and passing round the secret box of tasks, embracing the support and emotions from individuals, or group discussion without the connectivity delay on the zoom screen. It tightens friendships and builds trust and confidence, knowing that you can cope, that you have got this!

Sitting in a workshop and learning about your symptoms can be a light bulb moment, especially when your fellow learners also say, ‘yes I get that too!’ It’s such a relief that its not all in your head, you are not making it up and everyone around the table agrees with you. It’s like pieces of the jigsaw are being found and put in place and the more we learn about our symptoms, the more we can accept our illness and manage it.

Volunteering adds value to your life

A lot of groups need to fundraise to be able to do the activities they want. Some members when they feel ready volunteer their time to help at events, ask for raffle prizes or give out promotional leaflets to community venues. This also gives them a renewed sense of purpose, which they may have lost from having to leave work or from living alone. It allows them to show that they appreciate what the group is doing for them and in return it allows the group to make that member feel valued.

Some other roles that members may feel they would like to do are, being on the committee, being a welcoming buddy or a mental health champion. To sit and listen to someone without judgement is the most powerful life changing support we can give each other, especially with an invisible illness, to be able to do that for a new member in turmoil, like another member did when you first joined is very rewarding, it allows you to take stock and see how far you have come; it is very empowering.

Can a support group save your life?

You don’t realise how important you are to members until you have been introduced to their family, it can be a very humbling experience. Especially when they say, ‘this is Julie, this is the lady that saved my life!’ I was quite dismissive of the enormity of the impact I had, had on the first group member who said that. Surely, that was a bit of an exaggeration? But no, there have been several occasions when members have expressed how I have brought them back from the brink. One member had given up completely and had taken herself off the transplant list until she spent an hour and a half talking to me last summer. I didn’t know how acute her situation was, but it wasn’t until Christmas when she spoke to other members and stated that, that phone call had given her the will to live again!

Not only do we learn about our condition and how to manage it, we build friendships that can also grow outside of the group. We build our confidence and self-esteem, we regain our identity, our mood lifts and our stresses are reduced, which in turn reduces our pain and symptoms. We learn new life skills that help us manage our physical and mental wellbeing. We learn to have a life with fibro! However, it’s not just about joining a supportive community it’s about wanting to live again.

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