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Social networking online - you are not alone!

Helena Jidborg

Open Door - February 2008 pages 8-9

woman at a computer

When I was diagnosed with MS in February 2007 my head instantly filled with questions about what this would mean for me.

My neurologist explained that an MS nurse would contact me, hopefully the following week, and schedule a meeting where she would be able to help me with all of the questions I had. That all sounded good so I asked him about reliable sources on the internet to read in the meantime and he told me about the MS Trust and the MS Society websites. He also warned me about there being a lot of absolutely rubbish information out there and that I should be careful.

When I came home, friends and family were practically showering me with questions. What will happen now? Will you start some kind of treatment? Will you need to stop eating gluten and dairy? Will you be able to have children? Will you end up in a wheelchair? I just had to tell them that I honestly didn't think anything had changed that much right now, but I didn't know. I needed to talk to the nurse about all this.

The next week passed and I didn't hear anything from a nurse. I have to say that being patient is something that I am not very good at, so I searched the net for both her email address and phone number and called her up. This was the first week of March and when she explained that she would not be able to see me until 20 April my eyes started filling with tears and I felt very frustrated and alone. She told me that I should keep a pen and paper at the ready and write down any questions that I had and bring them along and in the meantime, if there was anything urgent I could always call her.

She ended the call with telling me to stay away from reading too much about MS, especially on the net, that it would scare me and I should just continue living as I was. This was probably good advice but as I already mentioned, I am not a very patient person and it didn't take me many days before I was out surfing the net for information.

I should point out that before I started ploughing through the web I did go and see a GP, something I ended up regretting. My normal GP wasn't in and I got to see someone I had never seen before. As I started to ask some questions that had already popped into my mind he looked at me as if I were crazy. When I asked about research into stem cells, it ended with him saying I should think about having my eggs frozen if I wanted to have children in the future as some medication I might need to take could make me sterile! I now know this not to be true but after this I thought that surely the internet could not be any scarier.

First stop was general information about MS and what it would mean to me. I ended up on the MS Trust website. Here I ordered some factsheets and signed up for Open Door, which was very useful for me and handy to pass along to worried friends and family. I was very surprised and also happy to learn that the future doesn't necessarily mean doom and gloom for me.

My next mission was to get talking to someone with MS and find out what it was like for them. I thought about going to some meetings but I wasn't sure how to go about this, so I once again settled for the internet. I signed up to a web forum called MS People UK and also to a Swedish forum called Kristas (I am originally from Sweden). This site/forum was set up by a woman with MS and her forum is absolutely bustling with life. It didn't take long before someone messaged me and said "I heard you are a Swede in the UK with MS. I am moving to London in two months, want to go for a coffee some time?"

This is how I met Amanda. She has more or less been my mentor in all things MS. She was diagnosed over ten years ago and has so much information that has been very helpful to me. When I first encountered the strange phenomenon that is the 'MS hug', she told me all about it and how it was for her. Just to hear someone else knowing what you are going through helps immensely. Now when Amanda and I meet up we very rarely talk about our MS, just if it is somehow making itself noticed or getting in the way.

The internet and social networking online has been very good for me. Not only did I find the information I wanted and a good friend as a bonus but I also found my way to the MS Trust where I now work.

One of the first things I did after joining the MS Trust was to set up a Facebook group and within just two weeks we had over 300 members. There is a mixture of people with MS and their friends and family but also MS healthcare professionals. Here people can leave a message if they want to talk, let people know about research they are doing, read about fundraising events we are running and lots more.

Whether you are a fan of it or not, social networking sites like Facebook are the way of the future and the internet can be a great resource for someone with MS - just as long as you remember to not believe everything you see out there.

To join our MS Trust group, go to Facebook (new users will need to register), search for MS Trust, click on groups and you will be able to find us from there.
MS Trust's My Space site
MS People forum
MS People UK discussion list

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