Social media holds the potential to connect and empower people, but it can just as easily tear down and dehumanize them. For one Canadian woman on Facebook earlier this week, it did both.

The photo Facebook deemed "undesirable." (Photo courtesy of CTV News.)
The photo Facebook deemed “undesirable.” (Photo courtesy of CTV News.)

Karen Bingham has lived with primary lymphedema for most of her life. Despite her father and six of her siblings also having lymphedema, however, she has often felt isolated and misunderstood by the rest of the world.

Frustrated with the lack of awareness surrounding her condition, Bingham decided to host a symposium to help educate her community on lymphedema as well as create an opportunity for people to connect with one another and learn about their local treatment options.

To help promote the event, Bingham posted a photo—a close-up of her swollen bare legs—on Facebook. Not long after posting it, however, she was notified that her photo had been reported for containing nudity and was flagged for removal.

Even though Facebook recognized that her photo did not contain any actual nudity, they still told her not to use it to advertise her event. The subtext was not lost on Bingham: “Facebook decided that one of my photos wasn’t appropriate because it showed a body part that was undesirable,” she told CTV News.

So what happened here, essentially, was that someone took enough umbrage at Bingham’s body to report her photo to Facebook, and Facebook supported this intolerance by advising Bingham against posting the photo at all. The photo of her own self, mind you, that she had posted on her own page to promote an awareness seminar she was hosting about the very medical condition that caused her swelling in the first place.

confused ryan

This sends the message that Bingham’s lymphedema—and by extension, anyone with bodies that are not deemed “desirable”—are not fit for the delicate sensibilities of the casual Facebooker. And if her body (and our bodies) is not “appropriate” for Facebook, then what does that mean beyond Facebook? What are the implications of being told that your body is not socially acceptable enough to be seen?

Not only does this make zero sense, it’s also incredibly infuriating and offensive: it reinforces the shame millions of men, women, and children already feel living day-to-day with such a visible medical condition.

Whether it be through stares or comments from strangers, well-meaning questions from friends, or the ever-present voice of self-doubt in our own heads, we are often made to feel that our bodies are shameful. How are we, as a community, going to change this? How can we fight the pervasive message that we are “undesirable” or “freakish” because of our lymphedema—a message that we hear just as much from ourselves as we do from others, it seems.

The truth is, despite the overwhelming prevalence of lymphedema, there’s just not enough awareness or visibility in the public sphere or even within the medical community itself. It lies with us, the people living with lymphedema, to shift the conversation from shame and embarrassment to education and empowerment. Although some may argue that it’s not our job to educate others, I disagree—who better to speak to the experience of living with lymphedema than someone who does?

One of the best ways to spread awareness is to simply talk about it. Like many lymphies, I get asked a lot of questions: “What’s wrong with your leg?” “Why are you wearing that stocking?” These sorts of questions used to make me squirm but now I use them as teachable moments, and people have actually thanked me for informing them about something that they had never even heard of before.

I know this may not be to everyone’s comfort level—I blog about lymphedema, therefore have no qualms talking about it to anyone who will listen!—but sometimes keeping a super-simplified one-liner on hand can be just enough to quell a stranger’s curiosity while still spreading much-needed awareness. (One of my favorite go-to’s is “I have a lymphatic condition called lymphedema that causes chronic swelling.”) Just giving someone the vocabulary to explain what they are seeing—that this is lymphedema—can help them recognize it as the very real and very challenging thing that it is.

Most importantly, talking about our experiences empowers others within our community to do the same. For example, I’ve received hundreds of emails over the years from people telling me that this blog gave them the confidence to embrace their lymphedema instead of missing out on life because of it. Many of them have even gone on to start their own lymphie blogs!

Karen Bingham has had a similar impact: people from all over the world have been posting their photos in solidarity with her. “Some of them have never posted anything, have never shown their legs in public ever in their lives,” Bingham told CTV News, adding that their support has moved her to tears. What was originally a devastating setback on Facebook turned into a far-reaching positive movement not just for Bingham, but for the lymphedema community.

We are lucky in that we have an amazing community to draw strength and support from, to vent to and cry with, to celebrate and empower. So smile big, and keep posting those photos on Facebook and Instagram and Twitter. Every time we wear our garments in public, every time we share a photo or a story about our lymphedema, we are making a statement against the rhetoric that our bodies are “less than” or “undesirable” and are bringing the lymphedema experience into the public consciousness.

This photo and caption by Amy Greene of Ninja’s Fighting Lymphedema shows exactly what I mean by the immense power of sharing what living with lymphedema looks like:

Gaining acceptance and awareness for lymphedema starts with each other: from our youngest lymphies, like the amazing Emma and her team of Incredibles, to our most viral, like the ever-empowering Isa-Bella, to our most famous, like Academy Award-winning actress and LERN spokesperson Kathy Bates, and everyone in between—we uplift one another.

Stay Elevated, lymphies! 💙

Karen is still holding her lymphedema awareness seminar on March 5th. If you live in Nova Scotia and would like to attend, please view the event page on Facebook or her local classified ad for more information.