“I’ve gained information, emotional support, and understanding”

Caroline Gray says making friends with other people who have MS has meant she can share things you wouldn’t normally be able to 

I was diagnosed with MS in 1991 in my early 30s. My mother developed MS just after I was born. There was no treatment in the 60s and she died seven years later, which is very rare. Her sister also had MS but lived until she was 83.

As my experience had been quite traumatic as a child, I was very reluctant to willingly engage with anyone who had MS. There was no medication to discuss, and neurology services could not provide any guidance. I did reach out to the MS Society but that was not a very positive experience. In 2015 however I was at last eligible for a DMT and began to interact with other MS people on twitter who were also taking it.

Five years later we were all locked down in fear of another more potentially fatal illness and one which may have unknown consequences for those with MS and other conditions. Scrolling through MS information I came across MS-UK and enrolled in their online exercise and yoga classes and before long became involved in the new Monday Media pod. We were all watching so much TV at that time that a group met online to share films and TV ideas. This soon developed and before long we were talking about our MS and sharing information and experiences.

After that other groups naturally began to emerge and weekly online chats became a lifeline for many to talk about our struggles with the illness, our varying experiences of the NHS provision, medication, equipment and life in general. Women’s group, men’s group, online drop-in sessions, a book group, newly diagnosed group and more sprang up and I host the Friday women’s group. Lively WhatsApp groups provide continual support about all things MS and all things non-MS.

For many years I didn’t interact with anyone else with MS. Then in lockdown, I came across MS-UK and enrolled in some yoga and exercise sessions.

I have gained so much from the peer pods. Information, emotional support, and understanding from those who totally empathise about living with this lifelong condition. I have made friends with many and have told them things about my experience with MS that I could never tell others who were not affected. It can feel daunting to join in, but new faces and experiences are really welcome and valuable. There is no pressure to come up with topics to discuss or even to join in the chat. It may be enough to just listen at first, and that is fine. This is such a wonderful resource for us, and I encourage anyone to give it a try.

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