Empathy: Looks Can Be Deceptive
Karen Thatcher
Chronic illness sucks for so very many reasons…
“The thing about social media is, it’s not real.”
Chronic illness sucks for so very many reasons…and INVISIBLE chronic illnesses are something else entirely. Whether it’s physical health or mental health (or both), the constant state of suffering whilst looking “fine” is a huge burden and brings about so many challenges.
The thing that I (and many people I know) struggle with the most, is getting “normal” people to understand that looks can be deceptive…
With social media now being so entirely part of everyday life, it makes it even harder for people with invisible illnesses, to show up guilt-free. The thing about social media is, it’s not real. What’s going on in someone’s life vs what you actually see is vastly different. And so it should be.
Kate Middleton has been a perfect (and horrendous) example of this, to the extreme. This week she has been mocked and laughed at, slammed and torn down, for being silent on social media. My feeds have been jam-packed full of uncomfortable memes and doctored photos and “jokes”. The world makes the assumption that we have the right to know everything that is going on in people’s lives (especially celebrities), that we have the right to have access to the whole story. This women, a mother; a wife; a daughter and a friend, was bullied into sharing a very personal part of her story- a cancer diagnosis, with the world. Empathy was non-existent in social media for her this week. The understanding that it is ok for people to share some of their story but not all, was not even a remote consideration. And I am really so sad and sorry for her and her family who have had to sit in the grief of her diagnosis, whilst also sitting in the grief of the world essentially cyber-bullying her for stepping away in a moment when she needed to. We haven’t earned the right to her story, and she should never have been forced into sharing more than she wanted to, soon than she needed.
We live in a day and age where we have forgotten the art of thoughtfully and privately sharing the most challenging and vulnerable parts of ourselves with the people who have earned the right to hear our full story. Social media isn’t the place for it. And so what has developed is an inauthentic ‘authenticity’ that crafts an alternate reality of our lives. That is not necessarily a bad thing. We all need an escape from the mundane, and sharing the good stuff for everyone to enjoy with us, is an excellent thing. But we have to remember that we cannot judge what’s really going on in someone’s life from a single photo that they post on social media, alone.
“Social media presents a polished & filtered version of reality, where struggles are masked & imperfections are airbrushed away.”
In today’s digitally connected world (where we’re "more connected and accessible than ever, but lonelier than ever too), social media platforms serve as a single window into the lives of others. You’re seeing into one room of a huge house, and that’s the room that is kept tidy; kept clean, and visibly acceptable to host guests in- it’s the room with the curtains open. Social media often presents a polished and filtered version of reality, where struggles are masked, and imperfections are airbrushed away. It’s a carefully curated facade, a highlight reel that cannot and should not capture the full spectrum of human experience. (Even the posts designed to be an authentic look behind the scenes, have been thought through and posed, only showing reality to a limit.)
For anyone grappling with an invisible illness, this mismatch between appearance and reality can create an overwhelming feeling of isolation and misunderstanding, on both sides of the fence- as a viewer and a participant. On one hand, there is the sadness of watching your peers live lives that you hoped for and will never see; hitting the “normal” milestones for your age, whilst you grieve the losses in your own life. On the flip side, you have a constant and exhausting narrative of guilt and justification when you share a photo of you doing something relatively normal, without the ability to also showcase the rest you needed to have beforehand and the painful recovery afterwards.
My last 3 months have been confined to a bed while COVID tried really hard to snuff me out. Christmas was cancelled, so many plans changed, sadnesses and losses for me and my family. It was so important for me over most of that period, to avoid social media to protect myself from watching everyone else enjoying life whilst I was not. I’m still battling, and it has been a really tough time of recovery, which I have not fully made yet. Last weekend was my biggest brother’s birthday, and we had a fun weekend planned. I was not going to let COVID steal that time from me too. And so for the first real-time in 12 weeks, I got up and out of bed for a whole weekend, plastered on make-up to cover my ghostlike face, forced a smile, and I had a really great 2 days. (Physically hard, but emotionally rich.) The recovery has not been pretty, and there have been very few people who have seen the extent of that, but the emotional weight of deciding whether I could post a single picture from the weekend has ironically been a heavier burden to carry. But one that I know WELL, and one that is a consistent battle every single time.
There is this conversation that spoonies have in their heads before they post a photo showing that they had a good day, and it goes something like this:
“If I post this, will people think I’m a fraud? Or will they think I’m totally fine and better? Or will they think I can do anything and everything now? How can I let people know that I had to rest for a week before and a week after? What if I have to say no or cancel some plans this week and the person will see that I went out and think I’m lying to avoid them? What if my friends don’t understand that I have to prioritise activities and hate me for not being able to spend time with them? What if people don’t understand that this one photo doesn’t reflect my everyday life? How can I PROVE that I’m not well if I post a photo of me LOOKING well?”
“How can I PROVE that I’m not well if I post a photo of me LOOKING well?”
Let me just repeat that last one “How can I PROVE that I’m not well if I post a photo of me LOOKING well?” That one sentence probably sums them all up. People with chronic illnesses spend a lot of their visible lives trying to prove the reality of their invisible lives so that others ‘believe’ them.
Living with an invisible illness means battling symptoms that others can't see, and that you can’t easily explain. It means navigating a world where your pain is dismissed because it doesn't fit neatly into society's perception of sickness. It means constantly having to justify your limitations, to explain why you can't always show up or take part in life in the same way as others. It's exhausting, frustrating, and often entirely lonely.
Empathy is an antidote in a lot of situations. It’s the willingness to look beyond the surface appearances and acknowledge the complexities of human experience. It’s recognising that just because someone LOOKS “fine” doesn’t mean that they ARE “fine”. They may be fighting battles that you know nothing about. Social media is a world of incomplete information. There is nothing wrong with that unless you take it as the full gospel truth…
Awareness and a willingness to try to understand, is the only way that we can cultivate empathy in the age of social media. It takes an active recognition that the images and stories we see online only offer a small glimpse into someone’s life and that if we choose to comment on that part of their story, we need to do so with wisdom and the knowledge that it will have taken much more than we will ever know, for someone with a chronic illness to post that smiley photo. We must choose our words wisely so that we don’t add to the guilt and need for justification that they’re guaranteed to already be feeling. Empathy through awareness means resisting the urge to make assumptions. It means pausing in the scrolling to remember that what we’re seeing is a snapshot and is connected to a real-life person who deserves more than a snap JUDGEMENT.
The next time you scroll through your social media feed, remember that looks can be deceptive. Behind every photo is an untold story and one that you may never hear. Take a moment to pause, to truly see and to empathise with the person behind the screen.
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This is me, Karen, the Thatch behind the Creative. I have an Empathy Card business designed to give people the words to say when there are no words. When I’m not doing that, I’m a Freelance Creative & Comms Consultant passionate about helping and equipping people to communicate the voice of their organisation in a creative and sustainable way. Get in touch, I’d love to hear from you!