Support Group Leader – What’s in it for me

When I was diagnosed with Systemic Scleroderma in 2010, I had no idea what that diagnosis meant. What it meant for me, let alone what it would mean for my family, my career or in fact my world. Like everyone else, the first thing I did was “Google it” and was inundated with a whole bunch of information about symptoms, the tests that I would have, the specialists I would need to see, what Scleroderma could do to me. Very little about what I could do, to help myself to come to terms with being someone with scleroderma.

It was then I realised that I needed to hear from others with Scleroderma. To find a community where others understood my thoughts, feelings, fears without the need to give me solutions but instead explore the opportunities.

This is when I reached out to a local support group. I had been living with Scleroderma for about 3 months and met with a small group of people who had been living with Scleroderma for some time. Whilst I would love to say that this was a great meeting and everyone was so supportive and welcoming, it was not my experience. It was scary. Yes, I was welcomed but very quickly people began talking about how awful the condition was and that they hoped I would not get the symptoms they had. These statements were quickly followed by people poking my skin and looking at my fingers saying that they had started the same way. I found myself trying to find the positives in their lives and counseling them, rather than being supported in coming to terms with what Scleroderma meant for me.

I didn’t return to the support group. Instead, I sought out support from my own network of family and friends as well as my medical and nursing community.

 As I speak to others within the Scleroderma community sadly, this is too often the story we hear. Whilst research across all areas of social studies clearly identifies the benefits being supported has in achieving better medical, social and psychological outcomes, we still don’t see the same investment being made in this aspect of care.

Some 10 years later I retired from work, and now found myself with a lot more time on my hands. When my son was at school, I found myself scrolling on social media a lot more and began linking in with the Scleroderma Australia community on Facebook. There I heard of an International online patient support group that was being facilitated by the SPIN team out of Canada in response to the isolation we were all experiencing during COVID-19 lockdown. So, I put my name forward. Why not, I had nothing else to do?

This experience was a game changer for me and set me on a journey of wanting to become a support group leader.

We met, a group of Scleroderma Women from Canada the US, UK and Australia. We not only talked about our own scleroderma challenges but the differences that we experience across our countries. It was full of information and strategies that we could use to make our life during lockdown so much better and for the first time I felt a real sense of community. It highlighted to me the importance of connection, the importance of being there for one another and making that commitment of being there. The power of sharing ideas laughs and tears.

I have since undertaken further training in leading support groups and continue to work to facilitate others in establishing themselves as support group leaders Nationally. During this training I was reminded of why many people don’t engage in support groups, some of which were mine. Whilst Scleroderma can always make it difficult to attend meetings from time to time, things such as ensuring the culture of the support group is not negative and making sure that the group is well run was still within my control. Also making sure that I had access to the right information through reliable sources was key, which I found through Scleroderma Australia and our International colleagues.

I am now leading a Monthly online support group which people from across the country are welcome to join. This is to assist those who are isolated due to distance or their condition to still be able to connect.

Scleroderma Australia has also established the National Scleroderma Support Group Leaders community, hosting monthly meetings and an online platform to support us. This is a place where we can share ideas and resources about leading support groups, so we too have the support we need.

I hope you too can find such value in connecting and wish you all well.

Cheers,

Tara