49/365 – Getting involved in the myasthenia gravis community

Following on from my post about being defined by myasthenia gravis, I want to write today about getting involved in the MG community.

As I said yesterday, hiding from the fact that you have MG can be not only damaging to yourself but also it limits the progress of raising awareness in your social circle and beyond. In order to feel strong enough to speak about your condition, having support is key.

While people have a number of arrangements, a great place to get, and offer support in return, is the Myaware community. With regional get togethers across the UK and Ireland, a young persons group in London (with the potential plan of moving meetings around to other parts of the country), numerous events and an active online community, there are many opportunities to discuss your situation, feelings and raise any questions you have with fellow people with myasthenia. Not forgetting my international readers, there also seem to be charities across the globe that offer similar kinds of support.

Although charities have limited resources, if there isn’t a group in your area, and you feel there is a need for one, you could always get together some volunteers to run it.

The benefit of joining a support group
Joining the Myaware community was one of the first things I did when diagnosed in 2013. I needed to know how people coped, what their experiences were and that it wouldn’t always be this frightening.

I initially went along to a conference, where I met some lovely people who were full of information and warmth. I met a mum who’s daughter had MG and she was struggling to cope and I met a couple who mentioned their daughter also had MG and was involved in a young person’s group.

I then plucked up the courage to go along to said young person’s group. Not knowing what to expect, or knowing anyone, made it nerve wracking. At this point I imagined how difficult it would have been getting the diagnosis even a few years earlier when I didn’t have the confidence I do now.

Right away I was made to feel welcome and had some great chats about living with myasthenia but also, as it was coming up to Christmas, we were discussing lots of other things too. This fits in with what I was saying yesterday about not being defined by the condition – it is only part of who we are.

I’ve since been back to a few events and they have always been worth attending. The next young group, for people up to 45, is on Thursday 19 March and is a pizza making night in High Holborn, London. There are 20 places so if you are interested, email Sarah.hindley@myaware.org

If face-to-face doesn’t work for you
Whether it’s difficultly travelling to meetings, child care issues or shyness (along with many other possibilities), the group meetings don’t appeal to everyone. However, there is now a very active online community for people with myasthenia.

Today’s photo is how I’m often seen – checking the latest happenings in the myasthenia online community via my phone.

As I’ve mentioned before, the Myaware Facebook community group for people between 18 and 45 is a great tool for people to question, empathise, support and release. It is a very active and friendly page, with at least one or two posts most days from members. This means from the comfort of your own home, you can make friends and share experiences. It is a closed group, but if you are interested in joining use the email address above for Sarah.

Twitter and Instagram
There’s a growing international MG community on both of these social media channels and to find them all you have to do is search one of the following:

#myastheniagravis #myasthenia #mgwarrior #mg…

Again, these hashtags are used when people need support or to vent. Although these are not as active as the Facebook community yet, the presence is growing.

Another hashtag that lots of people with myasthenia use on these channels is ‘spoonie’, which I’ll explain tomorrow.

To sum up, whether you want face-to-face contact or prefer a virtual community, there are lots of options for you to get involved. I hope to see you in one of these communities soon.

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