Tag Archives: online community

186/365 – 7 days of myasthenia update

First of all, thank you to all those who responded to my idea of carrying on the blog next year.  

As mentioned in my 183rd blog, I’ve been thinking about turning this website into a place where anyone with myasthenia can write about what life is like for seven days. I’m keen to capture how MG impacts people differently and to create a safe space for the myasthenia community to share anything. 

I’ve also been thinking how great it would be to get family members, partners, children of, and friends of people with myasthenia to write what it can be like from their perspective. As discussed previously, there can be pressures and stresses on the loved ones of people with MG that may never be aired. How great would it be if this blog could also be a space for loved ones to share coping strategies, to trade stories, to feel like what they’ve got to say will be heard without judgement and to feel part of a community too.

Again, if I go ahead with this idea, these blogs can be anonymous. If you think you know someone who would be interested in contributing, or if you have a loved one who has MG and are interested in writing, please leave a comment. 

Warning – the warm and fuzzy feelings you get from being open, being heard and being understood can be addictive.

63/365 – Inspiring women

So I thought as it’s International Women’s Day, I should write something related today. The only trouble is I didn’t want it to feel forced. I have many inspiring women (and men) in my life but there wasn’t an obvious link to the MG other than the love and support they’ve provided. So what did I do? What anyone would – I googled ‘inspirational women with myasthenia gravis’. I’m delighted I did, as it led me to Women With MG. 

For those of you that haven’t heard of Women with MG, it’s an international online support group. From what I can see, there seem to be two main sources of activity – the online support group(s) on Facebook and the blog. 

Facebook group

I have submitted an application to join the group and I hope I pass the test. It will be interesting to see how it differs from the Myaware young generation group, which I find incredibly useful. Although I haven’t had any issues posting there and find the men in the group very supportive and thoughtful, I wonder if women will feel more comfortable posting personal questions and struggles on there. 

There also seems to be a family support group for parents of children with MG. It would be interesting to hear if any of you are currently members of that group.

Blog

I’ve had a quick scan through all the blog posts and I would say for people with myasthenia it’s definitely worth doing the same.

The group has focused on quality not quantity (unlike me). Each post is well crafted, informative and engaging. I learned from reading it that the song Her Diamonds by Rob Thomas was written about his wife having an autoimmune condition. I read some very courageous personal stories which members had shared. But the entry about the group’ step year anniversary was the one that moved me most. It persuades readers about the importance of raising awareness about myasthenia gravis by discussing the members who have died, and those in the wider MG community, in the two years since the group started. It stresses that those who say MG is no longer a life threatening disease are wrong and that the only thing stopping it from being so is good medical care from professionals who really understand the condition. Unfortunately, there are many less informed medical professionals and until this is no longer the case, MG continues to be a death sentence for some.

Raising awareness is the key message here and once again I was glad that I had started this blog. If you, dear reader, know any medical professionals please share the word about myasthenia gravis as it could save lives. 

For now, I wish you a happy international women’s day and I look forward to being able to tell you more about the group as I get more involved.

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.

Facebook
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.