In June 2019, I decided to intentionally and publically share my Parkinson’s disease (PD) journey using Instagram as my social media HQ. I use Twitter mainly for political ranting and Facebook for Beach clean hoo ha.
In theory it was just a matter of altering my privacy settings to ‘public’, but in reality, it has been significantly more complex.
Firstly, I needed to get the all clear from my children and husband. Would this be too challenging for them to see? They said not and given that they see the daily manifestations of my PD I think they were making an informed decision. So then to ‘sanitize’ my feed. What was and am I happy to share with the world?
Since then I have wrangled with being ‘seen’. I have started working with Parkinson’s UK as a result of my posts, which feels so important. I’m finding meaning amid the shit-show of this awful diagnosis. However, what to share? I always get lots of likes and comments when I post pictures of me looking active, well and happy. The information posts are less well engaged with, but I think that’s to be expected. The ones of me looking ill or showing the challenges of my diagnosis seem to split the room.
If someone collapses in public the are several passerby reactions… People either
Dash to help.
Want to help but don’t feel able to
Organise things from the wings
Panic, freak out, feel sick
Want to walk as fast as possible in the other direction
The list is not exclusive, but I hope you get the idea. I’ve found it hard to know that I’m posting things that may trigger uncomfortable feelings and reactions in others. I’m trying to stick to the original vision I had. Namely to use my influence (such as it is) to help increase awareness of PD and to reduce the shame associated with PD for anyone diagnosed with this utterly awful degenerative neurological condition.
I’m a work in progress. I’m making mistakes but learning from them. I want to make a difference and develop this new role. I’m growing and as my friend so beautifully put it ‘when you grow, you get growing pains’.