This letter comes from a land of discontent and brutal honesty, a letter that was very difficult to write due to its personal content, sent with apprehension and nervousness as to whether I should say what I am about to say to you, the readers online.
A few days ago, first thing in the morning, I logged into my Facebook account to look at my notifications – what had been happening in the world whilst I’d been sleeping. I’m known by many as “wordgirl” as I’m an avid reader, writer, blogger and social media user, often seen by my friends more online than in real-time. Therefore, this letter won’t be short. I have worked abroad in many global locations and time zones, lived far from those I consider to be close to me – my “box of trust” friends – and, from a professional research perspective, shared my adventures of work regarding China (and beyond) online. Facebook, you have been a great tool for this and one of my main communicative portals…though, this is about to change.
On the morning I mention, I was at the end of a solo research trip in Asia for one month, sitting in my hotel in Beijing, alone, when I suddenly noticed a string of sponsored adverts and suggested groups for things…services…potential futures…that I’d never noticed before and were completely inappropriate to my current circumstance, inappropriate in the sense that at that moment, and as I write this letter, I can feel my heart pounding in my chest as it brings raw emotion to the surface. I can feel my an energy that I don’t like and find hard to resolve every single day as I grapple with what I call “Amoy tiger tummy” – my chronic hidden health condition (HCC).
In July 2012, my HCC decided to take a severe turn into the unknown. During a visit home from my then life in Shanghai, China, my abdomen unexpectedly collapsed as I was standing in my parent’s bathroom. I can remember the moment it happened and the look on my face as I stared back at myself in the bathroom mirror. I knew this was a game changer. Since that moment, things moved very quickly. I had to move my life back to the UK and begin what was to become a life-long barrage of medical appointments, tests and (in part) unsuccessful reconstructive operations, and to confront a plethora of specialists and consultants who individually and collectively tried (and continue to try) to make sense of what was happening and why things are not working…not working to the extent that I can’t digest foods and go to the bathroom without many drugs and physical therapies…to the extent that I cannot have children. Four of the hardest words to write. Four words that I don’t think I’ll ever comprehend. The physical and mental strain this journey puts me through is like negotiating another world with no map, where every day is unpredictable and a fight…a fight to make things happen in the greatest possible way. Logging into Facebook on a daily basis is difficult enough as my friends are at the age of having their first or second child with my news feed often scattered with their latest joys and new adventures. To these miracles, I salute you.
This process of what I call “medical kingdom” continues to this day but now with a bitter-sweet potential diagnosis taking me to new medial territory of a degenerative gene disorder and harder times. I am encouraged by my specialists and consultants to research aspects of my HCC online, to gain further understandings and multiple perspectives and to connect to others who have similar experiences for support. Facebook has been a useful tool in this respect, engaging me in the realities of others and giving me hope; also as I work and play harder, I share my journey to help others. However, when I saw the sponsored adverts and suggested groups that morning in Beijing, it changed this positive experience immediately.
The sponsored adverts were for medical companies selling products for digestive conditions including colostomy bags (something I’ll have to face in the future), for health and exercise regimes (that I can NEVER achieve…I don’t need 6-pack abs thanks), and finally…and the most hard-hitting of them all…for fostering and adoption services. I’m holding my breath right now trying not to let emotion prevail. Surely it is my right to research and see what is out there to make my future what I deem possible, not you Facebook. Surely it is up to me as to whether I want to create a family in that way, not you Facebook. You’ve suddenly made everything a little more surreal Facebook. This is real Facebook. REAL. I am not a customer, a marginalised statistic due to my HCC, to target. I am a human being who is fighting every single day to negotiate life with clarity and peace, and if a good day, a smile on my face, often trying to get on with my life without thinking about the things I’ve just mentioned. This moment, much like the moment in my parent’s bathroom on that July summer’s day in 2012, is a game-changer.
As I write these words with a thumping heart, I am not looking for an apology. I write this to help the world acknowledge the reality of what Facebook is here for, that of monetary and momentary gain from commercialism and capitalism, rather than what most people use it for – to connect, to share, to discover, to realise, to instigate change, to make a difference, and so much more. It is almost impossible to get this letter to someone directly at Facebook, to a real person, as you have no email address or complaints form, so I’m hoping readers, my connections, friends, my “box of trust”, will help share this letter to get it into your eye line and into focus.
Stop trying to make assumptions about knowing your Facebook communities through automated advertising because it is more often that not failing. The links to advertisements that you felt were appropriate to my wants and needs, to the searches I’d undertaken online, are uneducated, insensitive and completely out of line…never to be seen again on my timeline. If you intend to continue to strive to be one of the largest globally renowned, digital communications companies, it is time you invested time in learning how to talk with digital empathy to us as real people, not as customers or service users. We are on your platform to make human connections. It may well be time to make my connections elsewhere.
Here’s to this conversation unfolding online and not necessarily with you.
Here’s to being digitally human, not digitally automated.
Known for “Connecting the dots that people can’t see”