When my Dr and I discussed the possibility that I may have Multiple Sclerosis, I went home and started searching for answers. My search led me to a website for people with MS, created and managed by someone with MS themselves. This website provided me the opportunity to chat with people within Australia who were living with the disease. Facebook at the time was in its infancy, and this website offered me somewhere to chat safely and anonymously.
Over the course of the 12 months leading up to my diagnosis, I spent a lot of time with the members of the website. They were there when I was trying to fall pregnant, and they supported me when we lost our babies, which then led to my relapses. Every step of the way towards my diagnosis, these strangers whose only connection to me was they carried the same disease became like family. When the day of my diagnosis came, it was them that I turned too for comfort, for I knew they had walked that road with me, and would know what to say. Sure enough they did.
As time past and social media evolved, for a number of reasons the website eventually came to a close. Some of its members, including myself shifted our group over to facebook, where our support for each other and new members continued. Soon I found I was the one offering the support to people who found our group online. There were those who were newly diagnosed, that were looking for people who understood their mixed bag of emotions, and those who had been diagnosed for many years. At times friends and family would ask if I would be willing to talk to someone who had been recently diagnosed. My inbox was always open to them, and I hoped I was able to give them the support they needed.
Peer support in all its forms offers people with chronic illness the possibility to connect with others who understand. In the times I felt isolated and lonely, I was never alone. My MS community were there a click away to offer me advice, or a listening ear, so the opportunity to provide the same support I received in abundance back into the MS community was something I jumped at doing, when the time became right for me.
A couple of years ago, I decided that I wanted to do more with peer support, and applied to do training to become a Peer Support Volunteer for MS Australia Limited (MSL). It wasn't until I entered the room to do the training that I realised I had never stood in a room with other people with my disease, knowingly. Here I was surrounded by people at all different stages of their disease progression and also a couple of carers as well. It was the most enlightening experience and I loved every minute of it. Doing the training meant I could be matched up for telephone calls with people who were newly diagnosed, who wanted to connect with someone who also had MS. It has honestly been the most rewarding thing to ever come from having Multiple Sclerosis.
In the past year with the assistance of MSL I started up a well needed Peer Support Group in my local area. It was not an easy thing to do, though I believe we have now found our feet. It provides yet another opportunity for people with MS in my local community to meet in a safe environment and be supported in all the good days and bad days, while living with this disease. I have watched friendships be formed, and our members have become more comfortable talking about living with MS. There is a sense of connectedness within the group.
Over the past 6 years since my diagnosis, I have offered peer support across many different mediums, facebook, twitter, phone, face to face and via my blog. My experience with the MS community has been one of the most enriching parts of being diagnosed with Multiple Sclerosis. I belong to an amazing group of diverse people, even if not by choice, we have come together. Many are no longer just other people with Multiple Sclerosis, they are now friends and family, who understand a part of my life that others just never will. They are walking the walk, right along side of me. The support, and knowledge is invaluable.
As social media has evolved, technology provides even more opportunity to connect with others with Multiple Sclerosis. I have watched the support network evolve from that one website I found many years ago, to multiple online and offline groups. Where no matter how isolated, or lonely this disease may have your feeling, support is just a click or a phone call away.
If you have been looking for the right Peer Support group for you I have listed below a couple of options for you to consider. I hope like me you too are able to find support within the amazing, diverse, MS community like I have.
MS Australia Website, where you will find links to your state MS Organisations to find out more about Peer Support in your area.
My MS Team is an online community website which also has an app for your iphone.
Oh and don’t forget to check our Facebook and Google + which both have a variety of Peer Support Group options for PwMS.