Whenever I thought about my life, prior to becoming a mother, I would never have thought of myself as any sort of campaigner. I was (still am in fact) a rather ‘arty farty’ musician with my head in the clouds most of the time. Social media was exactly that – social! I would snoop on my friends, arrange nights out and post pictures of my cats.
My world fell apart when Wormy was diagnosed with Congenital Scoliosis. We did not know where to turn, that is why, in part, I started this blog, so others in our situation could see they were not alone. The last place I thought to look for help was Facebook! We searched the Internet and found SAUK and in particular I found a blog: Infantile Scoliosis – J’s Diary, which brought Facebook groups to my attention.
I am now a member of multiple groups about Scoliosis, and I can thoroughly recommend anyone reading this, who is in a similar situation, to search Facebook for a group to join. I will add a list of some of my favourites at the end of this post.
However, not all groups are to my taste. You do have to shop around for the best fit. Some of the groups are quite militant, and I, frankly, find them quite scary. Others are mini dictator states, woe betide you if you express an opinion that differs from the founder of the group, or you will be shot down, in irrational argument, pretty quickly. There are groups which favour certain treatment options, groups that try to sell you (rather dubious in my opinion) miracle medications, groups that are at war with other groups (don’t you dare try to be a member of both without being labelled a spy!), and groups which are predominantly made up of members from a different country.
In my experience most groups are heavily populated by Americans. Nothing wrong with this, but when you are trying to find products recommended to you, there can be some difficulties. What is this product called in UK? Is it available in UK? Is it licensed for use by children in UK? Etc – it can be a minefield!
I started searching, in the groups I had joined, for other people in UK. Actually the first person I ‘met’ I pretty much accused of fraud, but that’s another story. By February 2015 I had made friends with 4 other ladies and we were spending most of our time chatting on Facebook about our childrens’ conditions. As we were filling up our timelines, I casually mentioned ‘why don’t I set up a group where the 5 of us could chat privately?’ I called the group a Scoliosis Friends and it was only ever meant to be the 5 of us.
A year later and we have 68 members, a Facebook group, a Facebook page and a Twitter account and we are hell bent on world domination – or something like that! I’ll bore you with the details of what we get up to another time!
The point is: there are places you can turn! There is always someone who has been there, done that, got the t-shirt! Someone who can attempt to explain the weird technical term your consultant used, but you were too shy to ask what it actually meant. Someone who can talk you down from the ceiling when you have had a bad day. Someone to commiserate with you when you are feeling sad. And dare I say it? Someone whose situation is worse than yours!
I’m sorry I sometimes seem buried in my phone -but social media has kept me sane. I’m not sure what state I would be in right now if it wasn’t there. I certainly wouldn’t know half as much as I do about Scoliosis!
List of Facebook Groups (in no particular order!)
Early Onset Scoliosis & Mehta Casting
Congenital Scoliosis Support
Scoliosis Inspire and Inform
Scoliosis- LOVE MY BACK!
Links to Scoliosis Friends
Scoliosis Friends – Facebook
@ScoliosisFriend – Twitter