Breaking the Relatability Barrier
I have noticed an unfortunate trend among my posts, my most liked and shared posts are almost always those that pertain to more mildly affected financially well-off spoonies. This makes sense as the majority of my audience falls into this group over being more severe or in desperate financial circumstances. But it is the opposite of what we need in MECFS advocacy.
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The effect of ME on severe patients and those without a personal safety net to fall into is the most tragic and more moving. It should be in all of our interests to highlight the plight of the most vulnerable. I don't think many of us disagree with this intellectually. So why is Instagram rewarding my posts opposite to this?
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Main Reasons
-Simplicity
-Passive decision making
-Personal connection bias
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Simplicity
Unfortunately, severe ME and broad socioeconomic issues around disability are complex topics much more difficult to condense into a cute graphic than "fatigue is more than being tired" or "mobility aids are good actually." As spoonies, it is easier to spend our limited energy-boosting simple messages we know we agree with over trying to fully understand a complex issue and raise awareness for the nuance of intersectional oppression.
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Passive Decision Making
Platforms like Instagram and designed around scrolling and liking. This means that we make hundreds of decisions in rapid succession without fully thinking them through. A simple relatable piece of content is much better at capitalizing on this passive decision-making, therefore, amplifying simple messages that appeal to the broadest possible audience.
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Personal Connection Bias
We are more likely to feel the need to share something particularly as a repost or story if we feel we have a personal connection to it. For example, dozens of people shared my post on diet and ME to their stories with personal anecdotes about having been told ridiculous diets that could cure their ME. In contrast, only a couple of people had personal stories related to my homelessness post which received half as many likes.
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The Problem
The issue here is homelessness is a much more pressing and life-threatening issue for MECFS patients than bad diet advice. But because we are unconsciously biased in all the ways I mentioned previously the post that gains the most attention, where activism ends up focused, is not where the need is but where the activists are most able to relate.
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What to do?
Knowing that the relatability barrier exists and is a major obstacle in MECFS and lots of other activism allows us to try to consciously correct our unconscious bias. Things I will try to do more include the following:
-Use statistics over anecdotal evidence whenever possible
-Follow #severeME and #verySevereME tags and highlight the voices of those worse off than me in my stories
-Make posts that highlight issues within the community regardless of whether the issue affects me directly
-Share posts to stories even when I don't have a personal anecdote
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What do you think should be done about the relatability barrier? What issue around MECFS do you feel is under-highlighted or absent from social media?
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Severe ME and intersectionality go hand in hand. Those without privilege are more likely to be unable or discouraged from pacing, to not receive an appropriate diagnosis or medical care, to experience or have experienced trauma, and to therefore become far sicker and more severely affected.
The problem is Instagram culture does not promote marginalized experiences and severe illness. It promotes babes with mobility aids and chronic illnesses that are cute, relatable, and uplifting. While some of this is simply a privileged bubble, there is more that contributes to this culture, primarily "relatability" and the unconscious biases that perpetuate it.
In general when liking and sharing posts we gravitate towards a few things:
Simple over complex - as spoonies, we have limited energy, simple statements we agree with are easier to process and share than long blocks of text on complex issues
Passive decision making - while we want to support the most severely affected when scrolling we make fast decisions often gravitating towards pretty, cute, or funny graphics over blurry dark bedroom photos.
Personal connection bias - the main reason for moving beyond the like button to commenting and sharing is a personal connection, we are motivated to share things that relate to us personally. But on a forum that already boosts the most privileged as above, this means simply adding to the echo chamber effect.
So what can we do to fix the relatability barrier? Following tags for severe ME and very severe ME, spending time on tags over accounts to see a more representative sample, boosting those less privileged than you and acknowledging your own privilege in posts all help. Remember, the most severe patients are the least visible and able to produce the least content so it is important that we highlight the experiences that are shared and highlight those millions missing who truly are missing from the conversation.
