Living with Psoriasis in the Age of Technology and Online Bullying
One of my biggest fears has been revealing a picture of my psoriasis severity online only for it to be taken and turned into a meme that reads, “Would you date a person with a skin issue?” I see these types of ignorant questions associated with random pictures all the time. Oftentimes I wonder if the person being featured in the picture with the meme knows. Most likely their picture is being used without their permission. If they do find out, I wonder how it would make them feel?
Last year, a woman on an airplane took a picture of a man's arm without him knowing. It looked like he had psoriasis plaques on his arm. She posted it on a social media page with a status that expressed how disgusted she was with his arm. The psoriasis community got wind of the cyber bullying and began to comment under the post informing the lady on how wrong she was for posting. Within the online support groups, we were encouraged to message her to educate her on what psoriasis is, but without bullying her. She eventually buckled and erased the picture with some lame excuse on why she did it in the first place.
This is another fear I have - being out in public during a flare with my arms and legs out and only for my picture to be unknowingly taken by some random stranger who then posts it on their social media. I have been to the nail shop a few times to get a pedicure when my psoriasis was at its worse. The whole time I was there I suffered from anxiety and was constantly scouting the place to see if anyone had their phones pointed in my direction.
The use of social media also has its pros. A few years ago, a host on a daytime talk show made a comment about psoriasis which was misleading. In the height of a well-known female celebrity revealing how she suffered with the disease, the host of the talk show referred to the condition as “just dandruff.” A patient advocacy group called upon thousands of those in the psoriasis community to contact the producers of the talk show to inform them that psoriasis is not “just dandruff” in hopes the host would correct and retract her statement. I remember reaching out to her on twitter myself. Although I cannot remember the outcome from our contact, it was awesome to see so many people advocating online and using the power of social media. Just think 20 years ago had something like that been said on TV there would not have been effective ways to conveniently come together as a community.
What could you do if you suspect someone is taking a picture of your psoriasis?
If you suspect someone is taking a picture of your psoriasis out in public I would not recommend engaging in a verbal confrontation that could go bad fast. What I would recommend is carrying “psoriasis cards” which are the size of a business card and have fast facts about psoriasis. You can print downloadable cards from the web or create your own. If you think someone is staring or taking pics, politely hand them a card.
How to manage online shaming
Managing online shaming is a bit easier because you have the ability to block trolls or anyone who makes you feel uncomfortable. If you see online shaming you can post links to credible sources educating the person on what the disease is all about. You can also gather other people from the psoriatic community to chime in. Remember things may work better in numbers, so the more people you have, the better the possible results.
Any suggestions made are not intended to replace the advice of a qualified medical professional. Please consult your healthcare provider prior to making any changes to your treatment, exercise or diet routine.