Instagram, stop censoring us

| Chris Paoli
Editor's note 03/07/19: All banned psoriatic disease-related hashtags are once again live. Instagram has yet to release a statement on the temporary ban. 
 
Community is key to everything we do. And growing that community is vital to every aspect of our mission. Social media is an incredibly powerful tool for educating the public and driving the conversation that benefits the more than 8 million Americans living with psoriatic disease.
 
Take, for example, the recent interaction between the Daily Mail and celebrity Kim Kardashian West. After the publication called her out for an apparent “bad skin day” in a tweet on Feb. 5, Kardashian West responded with, “It’s psoriasis all over my face.”
 
The reality star has not shied away from discussing and sharing photos of her psoriasis on social media. And her willingness to talk publicly about psoriasis has helped spark discussion among an audience who might not have been aware of the disease. Kardashian West’s response on Twitter garnered more than 19,000 likes, 720 retweets and 1,000-plus comments, many of which came from others living with psoriasis who shared their story, treatment tips and psoriatic disease-related hashtags. 
 
Even if 1 percent of those who interacted with West’s tweet had no idea what psoriasis was before, she has done a great service in spreading awareness. And this illustrates how powerful social media is to our cause.
 
That is why it is so troubling when censorship rears its ugly head on platforms like Instagram. Our community members have shared with us stories of Instagram blocking specific hashtags, including #psoriasiscommunity, #psoriasisawareness and #psoriasissupport, to name a few. 
 
If this sounds familiar, that’s because it is. Many Instagram users noticed a similar purge of popular psoriasis hashtags in 2018 after the company updated its content guidelines.
 
The Evening Standard, a UK-based publication, reported in 2018 that Instagram said the censorship of certain psoriasis hashtags was not permanent. “People use Instagram to connect around the things that matter to them, including sharing their experiences of psoriasis to raise awareness of the condition and get support from the Instagram community. In this instance, some psoriasis-related hashtags had been temporarily restricted while we removed spam content which violated our guidelines,” read a company statement.
 
What Instagram doesn't understand is that psoriasis and psoriatic arthritis are serious diseases – not spam or inappropriate content.
 
While there has been no word from Instagram for the reason behind the latest sweep of specific hashtags – or if the move is temporary or permanent – the continued censorship is detrimental. The hashtag ban is damaging to a community that relies on social media for support and to the collective efforts to raise awareness about the gravity of psoriatic disease. (Editor’s note: NPF reached out to Instagram for a comment but has not received a response.) 
 
In an Instagram post this week, we shined a light on the current problem and commiserated with many of you who feel frustrated about the censorship. The post elicited some great feedback (and even generated some media attention), including comments from followers like skappi who wrote, “I work in a bakery and I choose to cover my arms. My job is super supportive of my PsA but it’s the customers who unfortunately don’t understand and because of this, I choose to cover up. @instagram, don’t be one of those people.”
 
We encourage you to let Instagram know how you feel, like skappi did. And we will do everything in our power to help curb censorship in the psoriatic disease community. 
 
What you can do next
 
Follow NPF on Instagram.
Sign a change.org petition led by Psoriasis Association, based in the U.K., to persuade Instagram to restore all psoriasis-related hashtags. 
Contact the NPF Patient Navigation Center for free one-on-one support.

Driving discovery, creating community

For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.

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