Part 13: No fight left

Why I have to have a break from Facebook

I became so worried about people ignoring social distancing guidelines and invading my personal space out running that my friend Tracey made me this top. It reads: I'm on Active Chemo, PLease Give Me Space.

So I’ve come off Facebook for a while. I will be back I imagine: I will definitely post and share this blog, but mostly I would be sad to lose contact with people from back home and times past, who I now interact with, almost exclusively, via the ease of social media. Facebook in particular helps me feel connected to them, because even if we aren’t sending personal messages I can respond to photos they post, articles they share, comments they make. But, for now, I just need a break.

The world around us is a scary place and both Covid 19 and the death of George Floyd and the subsequent rise in momentum of the Black Lives Matter movement have brought out the worst and the best in us. Being isolated and shut up has made us both more understanding of the plight of others and inherently more aware of our own needs and desires. For some of us, this has led to a commitment to help and support others, and for others it has fueled a wish to pull up the draw bridge in an attempt to protect our own. And, perhaps because we cannot discuss issues and emotions in person, we have turned, even more actively than normal, to social media as our connection to the world around us and as a platform to voice our fears and worries without the care we might use in person.

Now, I know that I wear my heart on my sleeve; I know that I leave myself open. Time and time again I have words internally about my compulsion to share posts that might encourage debate or criticism…but I find it hard to stop - and that’s because I feel pretty strongly about things. I do try to read widely about the topics I share though. Not for a second do I simply think that my views are right and the views of others are wrong – I know things are never that black and white - but I do try to look at the world from as many perspectives as I can before I draw any conclusions and I try to share points of view that might help others do this too; I try to understand what it might be like to negotiate the world from a range of experiences that are different to my own, with different barriers and challenges to face and overcome.

I will always value humans first and foremost though: it is how I was brought up; it is ingrained in me and I am proud of that. I remember my mum instilling in me form an early age the message of that well known idiom: before you judge a man, walk a mile in his shoes.

I also try to remind myself, often, of my privilege. Apart from some misguided use of Australian stereotypes in an attempt to get a rise out of me, even as an immigrant, I have never experienced racism. And this is because I am a white immigrant…an ‘expat’ if you will – my face fits – I look like ‘you’.

I have never had to go without. I have always had food on my table. My parents could send me on school trips and camps and always encouraged me to take part in extra-curricular activities. I grew up in a house rich with books, with a room of my own and a back yard to play in. My parents prioritised outings to museums, galleries and the theatre. I didn’t go on holidays abroad, but I do have wonderful memories of family camping trips which were full of games and reading and new experiences. I had violin lessons and was able to play in a variety of orchestras and ensembles outside of school. My uniform was clean, my packed lunch hearty. I didn’t go to private school but I had a good experience of education. I was able to go to university with enough financial support from my family that meant I could dedicate my time to studying and not making money to survive. As such, I graduated with a good degree.

As a woman, I have experienced sexism and sexual harassment: I have survived a few toxic relationships; I have been ‘negged’ and ‘ghosted’. As a teenager, I definitely endured some questionable experiences in terms of consent. But the colour of my skin has never been a barrier to me.

My education means that I have been able to get a job that has offered me security, despite being on long term sick leave and throughout Covid – I do not have to worry personally about the impact lockdown has had on zero hours or short term contracts or the inevitable end of the furlough scheme (although this is something I do worry about for others).

And I am only too aware that, in so many ways, I am far luckier than many, many people. I know I am even luckier than many, many other cancer patients. So, every time something happens, every time a minority is demonised in the public eye, I try to remember this, and imagine for a second, what it would be like to be experiencing life from a different position – wearing different shoes – and when sharing articles and opinions on social media, I always set out to encourage others to do the same, or at least suggest a slightly different viewpoint, experience or explanation of the world.

I don’t always get it right but I try.

Sometimes, if I am feeling particularly impassioned about something, or if it’s late at night, I have clicked ‘share’ before I’ve really thought it through, before I’ve verified what the post says. But in general I do try not to share pure opinions that cannot be verified or where the author is not known and can’t be held accountable.

And yes, I do share posts that criticise the government. This is because I feel it is inherently important that we can and do question and interrogate those in charge, those making the decisions that affect the many - whatever party is in charge.

But recently, I have felt more and more disheartened by it all. Depressed even. The times we live in are just so strange and people are responding in such strange ways. I guess it’s human nature to protect your own…but this protectionist mind set is something I have always tried hard to rally against within myself – I have always hoped to try to value policies and politics that benefit and serve the needs of greater society rather than just my own.

My recent discomfort started way back when the government were playing around with the concept of herd immunity and Boris was joking about shaking hands with Covid patients, in an attempt, as I saw it, to down play the seriousness of what we were about to face. I felt distressed too by the language being bandied around about ‘vulnerables’: it was as though we were somehow expendable and our lives mattered less than those of the healthy – I wrote about this in some detail back in Part 7: Ma ma ma ma carona.

And then, as the lock down measures started to relax, I began to feel scared all over again – all of a sudden, out jogging or walking, I was finding people were making less effort to avoid me on the street than they were: I was being trapped, panicked, on pavements, forced to break the 2 metre distancing rule or run out in front of an oncoming car. People could argue that, as a ‘vulnerable’, I shouldn’t have been out at all, but I had discussed the importance of exercise with my medical team and we decided that the benefit, for me, far outweighed the risk (I wrote in detail about how important exercise has been to my ability to manage my treatment in Part 10: Let’s get physical).

At the same time, my Steve started coming home from the minimal trips to the supermarket he was making feeling angry, having been reached across or pushed past by people no longer respecting social distancing recommendations there either.

And then Facebook erupted with more and more criticism of any media that mentioned the high number of deaths, dismissing any questioning of the government’s measures to relax lockdown as scaremongering or fake news. And due to my own fear, I became increasingly concerned that any attempts to play down the risk, especially from politicians, was actually quite dangerous: like the initial herd immunity response, it sent the message that we could stop being careful and we could start taking risks. I was genuinely scared.

So I kept sharing articles to remind people that we were ‘not yet through the woods’ – I tried hard to highlight relevant quotes and often posted them alongside statements such as ‘an interesting take from an epidemiologist/NHS doctor/son who lost his father prematurely/expert on infectious diseases’ to emphasise that these opinions were coming from people with far more knowledge and with a far greater insight into what the data actually meant than myself.

Every now and then people would make comments which was ok. Often it was clear they hadn’t actually read the article or source that I had shared and were merely making a gut response to the title, at which point I could disengage with discussion because they hadn’t actually engaged with the specific issue I was trying to highlight (I learnt recently that journalists do not actually write their own headlines and this is why many are so misleading). Sometimes I could engage with valid discussion, and other times they would just end in an unspoken agreement that as we had been unable to change each other’s view it was best to let the thread go.

And as the world moved on, Facebook continued to ride away on waves of opinion and at some point, because my own brain was struggling, I found that I had reverted to mindlessly riding them too - scrolling through page after page of unsolicited comments. I don’t know why, but I was beginning to struggle to focus again; I just couldn’t keep my mind on any one thing for very long. So instead of doing anything productive, I scrolled…and the more I scrolled, the more unsettled my mind became and the more powerful that age old feeling of anxiety was – it started to take hold of my chest again – despite how hard, up until then, I had been working to control it.

I discussed it with Steve, and his response as always, was simple – come off Facebook. He had deactivated his account years ago and never looked back. But I was adamant that I couldn’t follow suit. So I sat myself down and decided that I would try to change the way I used it instead.

‘No more politics’ I lectured myself. Share about cancer, exercise, fun things you’re up to, pictures of your dog, good songs: just leave out politics. And whatever you do – don’t read the comments!

I would manage about a day before an article would pop up that said something I felt everybody must hear: something that might bring some enlightenment. And I’d click share again…and I’d start reading comments…again.

Eventually, despite trying really hard, I made a mistake – a mistake that sparked a ‘discussion’. The person who responded called me out – correctly: I had shared an ‘opinion’ – a screen shot of a tweet… it was unsubstantiated and unverified. But we all know it’s hard to simply back down, so the ‘discussion’ evolved regardless - albeit politely.

The main crux of our disagreement? They felt that the UK was managing the crisis well, and I did not. They felt the media was ‘scaremongering’ and I felt it had a duty to interrogate the data. My opinion stemmed from the fact that back in March, Chief scientific advisor Sir Patrick Vallance announced that ‘Britain hope(d) the measures it ha(d) taken to tackle coronavirus mean(t) it will have below 20,000 deaths from the outbreak’ (Reuters, March 17 2020). At the time of this ‘discussion’, the official death toll, as published by the government itself, was already double this at around 40K; excess deaths had already gone beyond 50k (now above 60K and amongst the highest figures in the world); there were still nearly 2000 new cases and still hundreds of people dying every day and the ‘track and trace system’ was still unworkable.

During our ‘discussion’, Public Health England and government figures were referred to in a vague way, including the assertion that any ‘new cases’ were probably related to people who had tested positive but did not show any symptoms (any evidence to support this claim or how this made us any safer was unclear) and that hospital admissions were also reducing.

I had not enjoyed that day. Clashing with somebody on line, alongside the other things going on in my life and mind, had left me feeling emotionally exhausted. I lectured myself again that I brought it on myself, and that I shouldn’t share these articles if I didn’t have the energy for the debate. I was left feeling flat and depressed.

Steve noticed my distracted and negative state pretty quickly and questioned me about it on that day’s drive to hospital. When I came clean his answer again was simple: come off Facebook.

I am not by nature a confrontational person, something that has made me an easy target in the past, and I guess why I find these on-line ‘discussions’ so draining.

Later that evening though, I responded one last time having learnt on the news that in fact, hospital admissions were on the rise and not reducing as had been suggested. The response? Complete dismissal of this information because the person I had been in debate with had ‘stopped watching the news’ or engaging with the media at all citing ‘fake news’ ‘scaremongering’ and ‘aggressive interviewing’. At this point I I decided I could disengage. I was left feeling completely frustrated by having spent an entire day feeling awful, for nothing: a discussion that was not based on any wider reading or interrogation beyond glancing at figures every few days seemed like a debate that was never going to have any winners – going head to head with an adversary unwilling to engage with other opinions beyond their own (and by that I mean the opinions of experts and analysts) was unlikely to achieve much more beyond my own distress. Numbers are just numbers – on their own they are easily interpreted as a glass half full or glass half empty depending on what you want to believe to be true. As 18th century writer and satirist Jonathan Swift said: reasoning will never make a man correct an ill opinion, which by reasoning he never acquired. And from where I'm sitting, looking purely at numbers without the human stories that go along with them means that you can forget that those numbers represent people – over 40,000 people, with families who loved them, who are now dead, who died before they needed to – over 20,000 of which could have been prevented according to the government’s very own scientific advisers (The Guardian, June 11 2020).

See, I believe it is the media’s job to interrogate, question and hold our government, policy makers and those with power to account regardless of who they are. Without a media that challenges and examines claims, data and policies, we would move into dangerous waters. If we only hear what we want to hear, how will we find the truth that lies between?

Following this ‘discussion’ I promised myself I would do better and maintain higher standards in what I shared in future. Or not share anything at all. I couldn’t spend another day feeling miserable about my inability to encourage people to think more about humans, on top of feeling miserable about having cancer. …and then George Floyd was killed by the very system that was tasked with keeping people safe and my anxiety went through the roof.

Initially I kept quite quiet: processing, reading, thinking. I spent time coming to terms again with my own white privilege, wondering how best to respond and show my support in a way that was respectful, meaningful and not ‘tokenistic’. I was also wrestling with a need to distance myself from political discussion on social media with the need to challenge racism when I saw it so as not to be part of the problem.

When the protests began I had to battle another internal worry – was it hypocritical to support the protests whilst simultaneously being very publically worried about the relaxing of lockdown measures?

So I sat on my feelings a bit longer and tried to listen and understand. And during my quest, I came across this passionate opinion piece written by Labour MP for Brent Central, Dawn Butler. I knew in my gut how important it was for the BLM movement to ride the wave of discontent and public outcry triggered by Gorge Floyd’s death, especially in light of the disproportionate number of Covid deaths within the BAME community. This article helped me begin to understand why protesters chose to attend the marches regardless of the risk. So I quickly shared it, despite my inner turmoil, and then rang my Mum in Australia.

(If you want to read more personal responses about why these protests were so important try these: for an American perspective click here, for a variety of British perspectives click here).

I needed to talk to her about my anxiety and distress – my catch 22. How do I change the way I use Facebook so that I can maintain contact with old friends, without feeling bombarded by the wave of opinions and ill-thought-out clicking and sharing that were causing me so much distress? Would not speaking up and not challenging the views of others on Facebook make me just as guilty as those having racist responses? How do I balance what I feel is my responsibility with saving my own mental health?

My Mum isn’t on any social media, but she is very socially aware and I hung up having made the decision that if I was going to stay on Facebook, it was definitely time to change the way I used it. For real this time. We decided that I would start by disconnecting with people I did not really consider to be friends in the real world, so as to distance myself from and limit interactions that were destined to end in confrontation rather than genuine discussion.

However, by the time I got off the phone to my mum, the article I had shared an hour previously had already prompted comments and responses. Mostly they were polite and measured, and I could respond in an equally polite and measured way.

One comment however, was not. Firstly, it had no relation to the focus of the article I had shared. As already stated, my article explored the reasons why people felt they must protest despite the risks posed by Covid – this person’s response (let’s call them WP for ease - not their actual initials) was attacking the minority of protesters who had engaged in a violent incident with police, (something neither the article nor myself had either mentioned or condoned) and linking this incident with all BLM protesters. It was also an incredibly hostile rant, and suggested that anyone who disagreed with their point of view were ‘scum of the earth’, making it, to my mind, a comment that appeared to not be open for polite discussion or debate at all. In fact it made me feel both intimidated and further justified in my quest to change the way I used Facebook. So I deleted the comment and continued my new plan by making WP the first person, of many, that I would unfriend.

WP was a friend of a friend of a friend, and I had not seen them in person for a long time, not just because in the meantime I had been diagnosed with cancer, but because I had already chosen to distance myself from them. On several occasions I had listened to them make misogynistic comments, mostly in relation to sex, as well as cruel jokes regarding women’s appearances - more often than not, their weight (it's worth noting that it is unlikely that WPs own BMI would place them within a healthy weight range either) - and I had felt really uncomfortable. I am also ashamed that I hadn’t spoken up. But I didn’t feel confident enough to do so at the time, knowing that if I had, I would have been the one that was ridiculed. I am not proud of this, but it is the truth. And I suspect that, despite the apparent success of the ‘Me Too’ movement, feelings like mine are still endemic – women who speak up against this type of language are considered 'trouble makers' – just like those who speak up against racism and white privilege. So, considering all of this, it felt right that I would start my Facebook rejuvenation by removing them. And in all honesty…I didn’t think they would even notice…or care.

Except they did.

Within an hour or so I had received a personal message asserting that I couldn’t take other people’s opinions, that I had a ‘cheek’ to ‘slag our government off’ and that the reason I hadn’t responded was because I knew ‘deep down’ that what WP said had been true. They finished by calling me pathetic.

Receiving this initially made me feel a little sick, but it also made me feel completely vindicated that not engaging in a ‘discussion’ with them was the right thing to do.

For so many reasons.

The fact that they had checked back on their comment in order to discover that I had unfriended them - Facebook does not announce these things – confirms my suspicion that they were out for a fight, not a discussion. The fact that they chose to attack me rather than stop to ask me why I had unfriended them, choosing to decide the reason for this themselves instead, would suggest this also. If they had truly cared about losing me as a ‘Facebook friend’ they would have. And if they had asked, I might have been able to explain that I had found their post aggressive and that the implication was that they already thought I was 'scum of the earth'.

Perhaps I could even have explained some of the emotions that had been building up in me over the last few months and that the need to change the way I used Facebook had been developing over a long time. I could have explained that unfriending them was just part of a process designed to protect my own mental health, whilst simultaneously balancing isolation and cancer. I could have explained how hard I was finding it to be on the other side of the world to my family and wanted to focus my energies differently from that day forward. But I’m not sure they would have wanted to hear it.

I could have explained that I didn’t have the energy to engage in debate anymore because the day before my chemo had been deferred for the third time: my neutrophils and platelets were again too low, making it too dangerous to proceed with my treatment yet again. I could have explained that these delays made me scared that the cancer would have more time to take hold again. I could have explained how these delays had also pushed the end of my treatment far beyond the end of my sick pay entitlement and that my worry about how we would pay our bills had returned. I could have explained that my increasingly irregular periods were making me suspect that my chemo was triggering early onset menopause and I was disturbed by what that might mean. I could have explained that I was scared that waiting for my body to be safe to carry a baby post chemo would make me too old to be eligible for IVF on the NHS. I could have explained that I was terrified that my treatment might not work at all, or that my cancer might just return further down the line - more aggressive than ever. I could have explained that I was haunted by the ethics of wanting a baby that I might leave motherless in a few years if it did. I could have explained that I had barely left the house, outside of exercise and hospital visits in three months, and therefore every emotion I had was compounded. I could have explained that at the same time, leaving the house made me really anxious, knowing that having low neutrophils and platelets make me even more vulnerable to Covid than normal. I could have explained that I felt guilty because even though I miss and worry about my real world friends, I don’t have the emotional energy to connect with them very well. I could have explained that even though I care desperately about what is happening in the world outside of my existence, I was losing the energy to fight, because all my energy was going into surviving cancer. I could have explained that these worries I have listed, are just some of the things that rattle around in my brain continuously, alongside Covid and recessions and a renewed and urgent awareness of my own white privilege and a genuine commitment to equality. I could have explained that the reason I chose not to respond to their comment and click 'unfriend' instead was because I just couldn’t bear to add yet another, inevitably negative experience to the noise that was already in my head – not because I just didn’t like opinions different to my own.

But they hadn't asked so I didn't explain.

The last straw though, actually came for me the following morning, when, from the moment I tapped the blue F on my phone screen, I was bombarded by a diatribe of racist posts comparing the death of Lee Rigby with that of George Floyd. And I knew that right then, at that moment, I just couldn’t do it anymore.

I am not going to patronise you by explaining why making this comparison is so inherently racist and indeed offensive to so many (however, if you genuinely do not understand please message me and I will try) – not least because Lee’s own family had already publically implored people to not use his image to “fuel arguments against the Black Lives Matter protests” and stated that “seeing his image used to cause hate of any kind, especially for those exercising their freedoms in protest against this issue, hurts.’ They had already explained clearly that they ‘find these posts extremely heartbreaking and distressing, and in complete opposition to what Lee stood for" (Evening Standard, June 4, 2020).

Yet still people shared them.

I was equally sickened to read that even Tory MPs had posted racist comments in a similar vein – specifically Lynda Symes and Robin Vickery.

It worried me deeply that people who were meant to be representing the needs of their constituents could so publically make it clear that they did not consider that this responsibility spread to the people of colour and those from the BAME community within their wards.

But I was perhaps more sickened by people that I knew clicking and sharing these same posts. My chest hurt. My head hurt. I struggled to grasp why they felt so threatened by a movement that sought to fight inequality and systemic structural racism and thus improve the world for all of us. Why they felt the need to perpetuate an 'us' and 'them' divide and mentality.

So I deactivated my account. There and then.

And I felt like I had failed: I should have been challenging all these people, trying to help them understand. But I couldn’t.

Because, admittedly, I have no fight left.

I did it not because I cannot to see the bigger picture, but because I am walking such a precarious emotional tightrope at the moment, and if I keep falling, I will be no good to anyone.

In her book ‘Why I am No Longer Talking to White People About Race’, Reni Eddo-Lodge writes:

‘I stopped talking to white people about race because I don’t think giving up is a sign of weakness. Sometimes it’s about self-preservation’.

And I know it’s easy for me to switch off my account, because as a person of white privilege I don’t have to live this particular fight every day – but I am living a different fight at the moment, but despite this, I still promise that I will keep fighting for others, just in a different, more healthy way.

So for now, I’m going to stay away from Facebook.

I need to do some reading; I need to understand the issues; I need to question and confront my own privilege and inherent biases. And I need to find a new way to use Facebook that does not make my chest hurt and my anxiety rise.

I hope you understand.

But reach out – perhaps we can connect in another way for now.

Further reading

I am in no way an expert, and would never purport to be one, but if you are struggling to see how big a problem systemic structural racism is in this country then please try to open up and look for, seek out and hear the real stories of real people.

I have only just started my own journey but here are some things I have read so far that have helped me:

A good starting point for grasping the impact of inter-generational trauma is this article by Richard Weston, writing on behalf of IndegenousX about the issue in relation to First Nations People in Australia. There is even an interesting chapter in the book Anti-Cancer Living by Dr Lorenzo Cohen and Alison Jeffries that explores some of the scientific research that has been carried out on the cells of concentration camp survivors and their progeny - finding that the cell damage caused by trauma in one generation was found to recur in the cells of multiple generations that followed.

I read up on the genetics of race (or lack thereof) in ‘How to Argue with a Racist’ by Adam Rutherford, a book that helps to explain why racial stereotypes are so inherently racist and have no scientific basis.

You could explore Britain’s racist, colonial history and the evidence that structural racism is prevalent across our society in ‘Why I’m No Longer Talking About Race with White People’ by Reni Eddo-Lodge already mentioned.

Journalist Afua Hirsch helps make sense of the British Empire's legacy through the stories of people who lived through it in her Podcast 'We Need to Talk About the British Empire' available for free on Audible.

You could also look into confirmation bias and how this has such a powerful impact in ‘Sway’ by Pragya Agarwal.

And when you finish those you will be directed to many other resources and books to read next, so add them to your list – that’s what I’m doing anyway.

Because I want to change, I want the world to change and I want to help others change. But I also want to stay balanced on my tightrope and come out of chemo and cancer and corona, alive – in more ways than one.