Love Hate Relationships with Facebook, and its Surprising Role in my Healthcare – undercoverlocal

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This is in no way a love letter to Facebook, a thanks to Zuckerberg or a claim that Social Media isn’t as bad as they say it is. It is something very intertwined in my life for better or worse, and I see it a bit like a free art installation in an empty mall which happens because people in the community work together to make a creative deal with the landlord (kudos to Urban Dream Brokerage), or a car park that some kids manage to use as a skate park. No matter the infrastructure, there might be opportunities for communities to use it in their way when navigating the perimeters creatively.

An Addicted Millennial

Since my feeds started filling with ads and recommended content more than updates from people I know, I have at times spiraled into a social media addiction I am not proud of. Once Facebook was a place to share interesting ideas and life updates, yet lately it has led me to unnecessary online shopping and scrolling through cat videos. It is likely to get worse with the recent updates from Meta, and lately I have decided to start using Facebook differently- only viewing content I intentionally look up, such as from groups I am following and people I know. It is hard to know the extent that this infrastructure shapes us and how much control you can really have over using something designed to influence your behaviour, but it seems theoretically that avoiding the feed would help?

I guess at this point I should own up to being one of those crusty millennials who stayed on Facebook and never got into any of the more hip social media platforms such as TikTok. Some people are leaving Meta altogether on principle that they don’t want any part in supporting the bigoted priorities of the organisation. That makes a lot of sense but I also feel personally unable to fathom shifting to something else or going without social media. I joined Facebook when I was 18 so for my whole adult life this has been the single piece of infrastructure that has managed my social life. I feel like it is heavily ingrained in how I navigate the world. Part of it is habit, but it is also the fact that everyone else uses it, and so to leave it may mean losing contact with some people altogether. It is at this point in my adult life that I sometimes consider if it would have been better to keep an address book, and perhaps even send annual Christmas cards- something to tell the wider circle of people in my life that they matter, even if I may not get to see them for years at a time. I think there is value in keeping those wider connections and it is unfortunate that a giant international for-profit corporation has come to have an almost complete monopoly on this task, in my life at least.

Facebook and Long Covid

The other more recent aspect of Facebook’s part in my life is the belonging to several Long Covid and ME/ CFS support groups. These have been lucrative in helping me to manage my condition and come to terms with my new reality since I became disabled with Long Covid over 2 years ago. Some of these have also started to open platforms on Discord to catch the people who have ethically opted out of Facebook, but Facebook remains the most populated of spaces and I understand that for many people managing these illnesses, the prospect of having to set up and learn a new platform would be a barrier to participation. The local and international online groups I belong to are safe spaces which are well moderated, meaning they will not be directly affected by the removal of fact checkers from Facebook itself. Time will tell, however, whether these groups will stay, and how Meta may require them to adapt.

My time of having Long Covid has often been lonely. Most health professionals I have met with say they know nothing about Long Covid in a very light way, as if it is not their job to know and as if they have no intention of learning about it. Sometimes this has led me to be given incorrect health advice that has made me worse, and it is the online groups which have mainly helped me to realise this. The rest of the time, since health professionals offer limited solutions I have read through community run forums to find health solutions to suggest to my doctor. Granted, there are phone lines and emails for the New Zealand support groups as well, but the Facebook group is a live, constantly updating feed including recent studies, input from experts and anecdotal experiences from people with Long Covid which are quickly responded to with advice, support and acknowledgement from fellow community members. I am lucky to be working full time, but these forums are also places to share notes about accessing disability support and financial help. All of these are very ad hoc processes in NZ as there is still little official recognition of this illness, unlike many other countries. As far as the international Long Covid groups...