Volunteers' Week: Stephanie - Support Group Leader

Monday, June 05, 2017

Stephanie has been volunteering with Endometriosis UK for just over four years and has made a difference to so many people's lives through her volunteer work. As well as facilitating the Glasgow Support Group, she hosted a Patient Information Day in 2016 and also trains new Endometriosis UK volunteers. 

Here, she outlines her experiences as a group leader. 

There are lots of reasons why I started volunteering with Endometriosis UK.  The main one was due to my own lack of knowledge about the illness.  I was diagnosed at the age of 23 in 200,. after an emergency operation to remove a large cyst which led to a discovery of endometriosis.  I was offered little to no information about this diagnosis and had absolutely no idea what it was.

I did some research online which led me to Endometriosis UK.  I was amazed that I had never heard of this condition yet it affected so many women. It then occurred to me that there must be lots of other women feeling like I did – alone and confused.

I have a background in community work and my instincts told me I had to reach out to as many people as possible in order to try and develop a shared understanding of the illness.  Endometriosis UK were recruiting for support group leaders at the time and I had attended one of their brilliant information events down in Manchester.  The feeling of connectedness and the information I gained at the event are what drove me to start the Glasgow support group.  I wanted to create a safe space for women to support and educate one another about the illness and its associated life and healthcare challenges. 

I’ve now been leading the group for four years and there are so many rewarding aspects of the role.  Being a part of other people's journey with the illness can be rewarding in itself.  I've had the real privilege of supporting women through their journey who were just like I was at the start – alone, confused and full of despair.  Many of these women have made huge efforts with their confidence and self-awareness to overcome incredible obstacles and whilst they may still have difficulties with the illness, they are leading happier and more fulfilling lives, some of them with children when they never thought they would be able to conceive.

It's also immensely rewarding when group attendees leave with a smile at the end of a group or event.  Often when new people come to your group you can tell from their body language that they are nervous and tense.  Some of that comes from being in an unfamiliar situation and some of it can come from the burden of holding in all these emotions associated with the illness.  By the end of a group meeting you can physically see that some of that burden has been momentarily shifted just by having the opportunity to connect with other women – It feels so humbling to be able to offer a chance for that to happen. 

Obviously the main challenge is the same for volunteers as it is for patients, trying to navigate through an illness for which the medical world has no agreed definition of its cause or cure.  I need to use a lot of patience in my role – given the scale of the issue and the number of people who are contacting us for support there is definitely scope for it to be a full time job! It also takes a lot of skill to remain impartial as people in your support group may be choosing treatment options that you don't necessarily agree with personally but it's important that we remain objective and encourage group members to have the confidence to communicate any uncertainties they may have about treatments with their healthcare professionals. 

Being a group leader can lead to so many special interactions and you get to meet wonderful people.  You are supporting people with their healthcare journey which ultimately helps you to become more informed about your own.  The act of giving your time to help others is very beneficial to your own well being as long as you manage your time appropriately and don't give more than you can.  The skills you can develop running a group such as admin, facilitation and healthcare knowledge are also brilliant for your CV.  This opportunity coupled with my previous work experience has led me to working full time in health promotion and studying part time towards a Masters in Public Health.  I believe these opportunities would not have presented themselves had I not pursued the role of group leader.  

To find out more about the Glasgow group, or any of our other support groups, please visit our Support Group pages