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 go, it is disheartening to hear of people from Australia and the UK who have access to much more funded and targeted healthcare support, but helpful that they can share what they learnt- another aspect to how Facebook helps me with my healthcare in a way that it probably shouldn’t have to.
Wearing a Mask
Personally, from reading reputable studies alongside several anecdotal reports of people who were at my level of functioning before becoming bedridden after covid infection number 3, I have decided to wear an N95 mask whenever I am in public. It is fascinating to me how rare taking such precautions is considering the very real risks. At the same time I understand that it is incredibly daunting to think of wearing a mask forever, and that if I had the luxury of being distanced from this reality I would probably take it too. There are also people in my position who are unable to mask or choose not to. It is a different decision to make for everyone, in a society that has so little public health measures around this situation and a norm of not even acknowledging Covid19 is still a threat. Some in the groups I am a part of choose to remain anonymous as they are not ‘out’ to friends, colleagues and/ or family about their health issues, so that is also a factor in deciding not to mask.
Wearing a mask all the time is easier than some people say considering the alternative of having to be cared for around the clock while in my 30s, but I will not deny it is a challenge. First of all is the level of courage it takes to present differently to the norm. I have rarely faced any direct abuse for wearing a mask but from stories I have heard that is always a possibility. Then, it takes extra effort to communicate with others without all facial expressions, and to assure them I am ok despite presenting unusually. Additionally, I face the double consideration of masking and my health limitations, especially when involved in bigger in-person events such as those required for my job. At these times, there are two international Facebook groups which help me draw strength. One is a group about masking safely while making a fashion statement- Still Coviding in Style. The other is Long Covid and ME/CFS Healing Through Creativity. Both groups are a great source of advice, support and encouragement. It is so valuable to have thousands in the same situation in one place, when many of us are from communities where we are the only one who is disabled and/ or masking.
Being Seen in Public
I think it’s important to write about things like this as I recently heard someone explain that a part of the public invisibility of these conditions comes from the fact that many with Long Covid/ ME CFS just stop turning up to things. They disappear and others move on, assuming they are busy or the connections are just growing apart, as often happens in this fast paced world. It’s hard to understand this especially, I imagine, when you see the person out and about without knowing what goes on behind the scenes to get there. There is a lot of variation in symptoms between people with these illnesses, but I can appear as able bodied for public events when I need to and have prepared adequately. Preparing involves planning the week accordingly, putting in extra naps and potentially doing other things to conserve energy such as putting off cleaning and delivering food rather than cooking or walking the 5min down the road to collect it. Every little movement can be saved and spent on something bigger, and then there is the need to factor in the extra time of rest afterwards.
There are a few barriers to attending events which are not widely understood. With masking, for instance, there is the issue of eating and drinking. As I can’t risk taking off my mask in an indoor place to eat and drink, I have to factor in the extra energy of getting outside with better ventilation to keep up sustenance, something which has extra importance due to my health and extra effort due to the energy of walking. Often I work out the situation with eating and drinking before deciding whether it is possible to attend something. The Still Coviding in Style Facebook group is full of people discussing eating at various scenarios, such as when attending a wedding, along with photos of beautiful unique looks complete with matching masks. It is a true art to have tight fit and maintain the safety of a high protection mask (like a N95) while decorating them to fit a look.
Musicians with Long Covid
As a musician, there is a whole other journey of adapting creative pursuits to the physical limitations of the illness. I recently performed on stage for the first time since I got sick, and turned to the Long Covid Creativity Facebook group for support in preparing for this. It was truly amazing to get so many messages from those in a similar situation with support, understanding and advice. Actually managing physical limitations is one thing and then another aspect is doing this while masking, which I found requires practicing playing/ singing while masked. There is a smaller group internationally who are in both categories, managing to perform while masked despite the physical limitations, but most I have met are either just masking or just facing physical limitations but choosing not to mask. There are venues and organisations in some parts of the world where air purifiers are provided at gigs to support musicians, and even some regular events which require audiences to mask. These types of measures have yet to come to New Zealand and overall I have had to face the reality that too many stars have to align to make performing live on a regular basis possible for me.
Despite this, I am very excited by the world of Long Covid and creativity, intersecting with a wider dialogue on disability and creativity which I am just starting to explore; the idea that your art is shaped by your personal journey and physical form in unique ways that are to be embraced. I continue to be inspired by producing music in my home, which requires less physical energy than performing live and has more adaptability to connecting with what I feel like on the day, not to mention it being safer not having to take unnecessary risks towards getting a further Covid19 infection. It gives me hope to be part of communities taking the present world as it is realistically, in all its gore and absurdity, and looking for creative and meaningful ways to engage with it.