In February 2019, Instagram banned multiple popular psoriasis community hashtags for the second time in a year. The ban lasted three weeks before the hashtags reappeared.
Though the hashtags are back, the community has received no response from Instagram as to why they were banned in the first place, or if it will happen again.
Instagram said the images were in violation of the community guidelines, but a week after they reappeared, people still didn’t get a real reason as to why this happened, what community guidelines the images and hashtags broke, or if measures had been put in place to stop this from happening a third time.
Don’t get me wrong. I completely understand that hashtags need to be monitored and inappropriate images removed.
But banning key community hashtags that some people rely on and completely silencing a community? That’s not right.
I’ve always found the online psoriasis community to be incredibly helpful, supportive, and loving. Some of the people I’ve met through these hashtags I now count as close friends. The people using the hashtags understand parts of the condition that people without psoriasis don’t.
Like being woken up at 3 a.m. because your whole body is covered in a burning itch. Or the disappointment of being told you can’t have a certain treatment. What about when people make well-intended comments that crush your self-confidence and make you feel more alone than ever?
I knew I wasn’t the only one to have received positive experiences through hashtags. I was curious to know if hashtag communities, such as the psoriasis community, had any mental benefits to users.
So, I reached out to Dr. Ysabel Gerrard, lecturer in digital media and society at the University of Sheffield.
“Hashtag communities have lots of benefits,” she says. “They allow people to easily find others with the same experiences and, in many cases, form genuine, lasting connections. Although psoriasis is more common than people might think, you might not know someone else with it in your day-to-day life. But Instagram lets you find someone to talk to, if that’s what you need.”
For so many people, that’s exactly what they need. Someone to talk to, someone who understands.
So, why would Instagram try to wipe out that community?
Gerrard believes it could be one of two reasons:“One, lots of examples of trolling within the community, or two, lots of examples of nudity — both of which break Instagram’s rules,” she says.
“There could also be another reason I haven’t thought of. But these issues ought to be dealt with at the individual level (i.e., by moderating individual posts, comments, or whatever it is that’s drawing the platform’s attention).
“The main issue with limiting search results for certain psoriasis tags is that it might worsen stigma. If Instagram as a company is saying ‘We don’t want you here’ to a specific community of users, this could have real consequences,” Gerrard says.
And that’s how it felt. Like we were shut out. Unwanted. Someone else telling us to hide away. That our skin and how we look isn’t good enough for the platform.
Aren’t people told enough how they should look? That we need to always be conscious of our body image?
Does my skin offend you?
That’s the one good thing that came from the second ban. Psoriasis warriors across the world posted more pictures of their skin, shared their stories, and made more people aware of how proud they were of their patches.
Instagram, you may try to quiet us and block out our non-‘Insta-flawless’ skin, but we aren’t having it. If my skin offends you, that’s on you.
I don’t know why showing off our bodies, being proud of who we are, and having self-acceptance in 2019 is seen as radical, but sadly, it is.
Jude Duncan is a psoriasis advocate who blogs at theweeblondie.com.