It was only recently that I joined a closed Facebook group for those with balance disorders. Previously I had hesitated in seeking out support groups as I did not want my world to be made up largely of talk about the illness, and to be constantly drawn to engage with it. I like to try and feel as ‘normal’ as possible.
I changed my mind and joined this group, which is very large and has members worldwide, although the majority live in the US. I am not sure why I changed my mind – perhaps to glean as much as information as possible about the latest treatments, perhaps because as time passes I need to know there are others in the same situation as me. No one outside the group can have access to the posts, and there is a sense of freedom in that.
What I have found very heart-warming is the encouragement total strangers give each other. There is a sharing of information about symptoms, treatments, what works, what doesn’t, what combinations of meds help, which doctors are good… but the posts I like best are those where someone reports a small triumph and everyone cheers! Recently a young woman shared that she had been able to get out to an evening party for an hour and included a photo – she was so pleased and there were lots of comments like ‘yay! Well done! You look great!’ Everyone was so pleased for her and everyone understood that this small thing was huge and would carry her through the next bad patch.
The group also provides an opportunity to rant – to express the complex feelings of frustration, sadness and anger which come with these disorders. And there are some very poignant posts when someone is in a bad patch and just needs to say so, knowing that others relate closely to what is going on for them in that moment. Comments are then very brief, sensitive and thoughtful, often including an assurance of prayers for that person and for all of us. Everyone genuinely wishes the best for each other, and that is very powerful, especially as we will never all meet in person. I am glad I joined.