Personal accountability, and the pathology behind why CI contributors post what they do, is a topic that is either delicately skirted around, or quickly devolves into an emotionally-charged flurry of comments in someone else’s post.
This issue is so important to me because, although I became involved with all the goodwill in the world, I internalised so many of the problematic mentalities and behaviours which I saw in online.
At least in my experience of the CI online community, there seemed to be three key themes to the posts I saw time and time again:
- “raw” and “unfiltered” posts, showing the grim realities of suffering with a chronic illness;
- achievement-based posts where people had been able to overcome their disadvantages to do something amazing; and
- awareness posts, mainly consisting of a personal story, maybe some statistics, and usually for a special week or month.
And so, because this was what I saw from others, this was the content I tried to emulate. Although I considered myself to be fairly media-savvy, I forgot that just because this was a welcoming and supportive online community, like other influencers, contributors still curated their content to emphasise specific themes and draw on certain emotions.
There are some amazing contributors who manage to strike the balance of educational and personal just right, but for so many it has become an unnecessary competition of revelling in misery and misinformation.
I’ll be honest, this took a serious toll on both my mental and physical health, and if you look back at the history of my posts it’s painfully obvious. My first post, for example, was after I had gone to the ER for debilitating pain from an injury. After everything was under control, I made time to quickly snap a selfie before discharge, complete with a ‘pretty’ filter, so that I could prove that I’d been there. It wasn’t until I had some alphabet soup labels for my diagnoses that I even felt like my contributions were valid and that I was allowed to exist in the CI sphere. Even then, I felt like I could only talk about the most severe of the symptoms I experienced, because everyone else had it so much worse than I did.
And then, with careful treatment and management plans, I got better, and didn’t feel like I could exist in this space anymore because I no longer critically ill.
I tried to focus on just raising awareness, but I could still find myself slipping back into old behaviours; emphasising how severe my symptoms were, taking ‘sickstagram’ style selfies. So I put myself on a mandated time out. Until I could be healthy in my online behaviours, I wouldn’t allow myself to contribute negatively and add even more problematic material to a space that is already so nebulous.
What then, is the right ratio of personal to educational posts? How much editing and curation of images is just personal branding, and what is excessive? What is the difference between sharing personal struggles, and being overly dramatic or attention seeking?
I don’t pretend to have all the answers, but for now, these are the guidelines I am committing to stick to:
1. The CI online community is about both support and awareness
It is important to have balance in each post itself, and in my content as a whole. Why am I posting this? What message am I trying to convey?
It’s okay to need to vent or share your struggles in hope of support or commiseration, as long as it is not the entirety of what you put out there online.
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2. It’s not a competition for who is the ‘most sick’
Everyone’s journey is different, no one experiences the same thing in the same way, and that’s normal. There is not a finite amount of support and outreach available which goes to whoever’s situation is most dire or who’s symptoms are most severe.
It is okay to have good days, and it is even better to share them. It shows that illness is a spectrum, that it is possible to experience positive changes in your health.
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3. To be an awareness advocate, you have to actually advocate
If I want to be able to reach out to others, and to share my story, I have to also invest time and effort in general advocacy. No one will understand even my own struggles, and certainly not the struggles of others I am purporting to advocate for, unless I actually share awareness and educational materials.
This doesn’t mean every post has to be an info-dump of statistics and links to relevant foundations, but it is important have a persistent flow of useful information. Yes, awareness weeks and months are important, but advocacy for such awareness shouldn’t start and end with each one.
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4. Feel free to hide that pimple, but don’t hide your flaws
It’s normal to want to take flattering photos, and it is totally fine to maintain a cohesive and consistent personal brand or aesthetic. But if you’re being authentic, that means sharing your flaws too, they’re totally normal and everybody has them.
Be realistic – don’t fake emotions you don’t feel, don’t succumb to the pressure to be constantly depressed or frustratingly chipper, and remember that no one has flawless hair in the ER!
Chronically Clumsy 