Listen to For the Curious here ⬇️⬇️
For a long time, I thought I was an extrovert. I can be loud. I talk a lot sometimes - usually when I’m overexcited or over tired. I was seen as a really confident kid. I was outgoing and social and loves spending time with people. I thought I had all the hallmarks of being an extroverted person. But then I got cancer in my 20s. And I retreated into myself in ways I never could have anticipated.
Nine months of being immunocompromised, exhausted, sick, in pain and not looking at all like myself led to me spending a lot of time on my own. Once I’d finished treatment and started recovery, people couldn’t understand why I wasn’t ready to integrate back into the real world. I was still exhausted, sick, in pain and not looking myself, but I was also broke, scared and anxious. My world became very small. I lost people as a result of how small my world became. I made the decision not to go back to an office or the job I had when I was the person I was before. I decided to try being self-employed. And many of the connections I had in my life became fewer. I didn’t work in an office with 95 other people any more. It was just me, in my one bedroom flat. There were new connections, obviously. Brilliant and beautiful ones from people who had trodden the same path as me. But they were fewer.
And over time, I realised either I had never been an extrovert, or cancer had made me much more introverted. I began to struggle to spend time with lots of people. Meeting new people felt like it would bring me out in hives because I was so afraid of being the person who’d had cancer. I was constantly waiting for the shocked faces, the tilted heads, the sympathy. And all of the above nearly always came. I no longer got my energy from other people. I was no longer as loud or vivacious as I had been. I still had (have) an almighty big laugh that echoes off walls when I deploy it, but I was changed by cancer.
Around that same time, Instagram started to become really popular. No longer were we posting photos of our dinner and applying the lark filter to make them look snazz. People were becoming photographers. Influencers were working with the platform in a different way. And I shared some of my cancer experience on the platform. I got a few followers and in time made more friends and more connections. I became known as a person with a cancer story to tell.
Eventually, I stopped wanting to talk about cancer so much on Instagram. The disease I had when I was 26 will always be a part of who I am. It has shaped my life in ways I probably haven’t even figured out yet. It shaped my career too - so I still do a lot of work in that space, which many people can’t understand. I still have moments where I think “oh shit, I had cancer once! That happened to me!!”. I still have countless anniversaries that stick in my mind like a splinter snagging on a pair of new tights. I still experience the losses of people who didn’t survive the disease I have survived. And so, sometimes, I find myself talking about cancer on Instagram.
Yesterday was one of those days. I also talked about in LinkedIn too. I’ve been working on a set of media guidelines with my friends at CoppaFeel! to try and create some behaviour change on the language we use around cancer - breast cancer specifically - as well as end of life care and death. I helped to create a research questionnaire, formulated approaches for in depth interviews and focus groups. Then I turned that into some patient-led guidelines. The research was overwhelming. It demonstrated just how impactful language we use around cancer is. And just how much it affects (and potentially alienates) those living with and beyond cancer. It’s a piece of work I am very proud of. So I posted this, linking the way we use language around cancer with Kate Middleton’s experience (don’t even get me started on that).
And it POPPED. OFF. The post on LinkedIn has been seen 5.5k times. On Instagram it’s garnered over 300 likes and 44 comments. People had thoughts. They had feelings. Suddenly, I was left feeling very exposed. This wasn’t about me, really. It wasn’t about my story or experience. In fact, I would hazard that most of the people who saw the post didn’t even realise I’d had cancer myself. But this was my work about something that mattered to me and I was frantically checking Instagram and LinkedIn every few minutes to make sure no-one had kicked off. That I wasn’t on the receiving end of some judgement. I even checked my phone when I was at my weekly choir practice - something I never usually do. Of course there’s always someone who has something negative to say and that’s fine really - I don’t expect everyone to receive everything I do with joy and optimism. The work I do can feel jarring and revealing and confronting. Especially this - telling us everything we think we know about cancer language is wrong. But I suddenly felt so exposed. Like I’d found myself stood on a stage in front of thousands of people without any warning and I was expected to be coherent and knowledgeable and a representative of an organisation I really care about (which I’ve done a MILLION TIMES) but without any kind of prep.
To be honest, I think I was partially overstimulated by checking social media and getting messages and comments and notifications every second. It was like the crowd I’d inadvertently found myself stood in front of were all shouting at me and prodding me, trying to get my attention. I felt like I was being pulled at from a million different directions. Not in an aggressive way. Because everyone cared, like I did. If anything, it showed how important this work is. But when I woke up this morning and saw even more notifications, even more comments and messages, I felt very raw.
This isn’t that necessarily, but I think there’s something to be said about mining our own trauma on social media. The algorithms reward it. My posts about cancer always get more traction than those that aren’t. Quite a lot of the time, those people who choose to share their stories about illness or trauma on social media do so because they’re seeking an outlet or support. And they might get it. But what happens after? What happens when they don’t have to talk about cancer as much but they’re not getting the (scientifically proven) dopamine hit from people responding to their posts? Where do they go from there? And how do they deal with finding themselves on a stage in front of thousands of people, when they could (potentially) never anticipate that’s what would happen?
I will keep posting about my cancer work even though it’s sometimes tricky for me to do so. I’m glad I shared that post on social yesterday. I’m glad it has been seen by so many people and I’m glad it seems like so many people are engaged in the conversation and also want to see change in the things the research has highlighted. We’re sick of the military language, of the inspiration p*rn-ing of people living with or beyond a disease. But I think this, for me, was a reminder that there is nearly always an individual behind a social media account and the impact of honesty on social media can leave us feeling like an exposed nerve.
My reaction to all of this confirms my suspicions I’m more of an introvert than I used to think. I don’t love being the centre of attention. I’m incredibly glad I’m a Tall Girl Alto 1 who has to stand in the back in the dark in choir concerts. I guess putting myself out there in the ways I do for work is allowing me to stretch and tiptoe into being more extroverted, but knowing I can always retreat with my cat and a book to recover.
I know writing this on a platform for the public is ironic. I know writing (long - SORRY) first person essays as a person who says they don’t love the spotlight could feel a little jarring. But introvert or extrovert, I’ve always been honest.
Should be noted - my top bananas at CoppaFeel! have been ace and reached out to me today to do a welfare check for which I appreciate. Shows they truly do care about the people they work with. More charities could do with being like CoppaFeel! IMO but perhaps I’m biased. I also went and very aggressively punched and kicked the air for 45 mins in BodyCombat (omg my high kicks today were ICONIC). That helped.