One time I was interviewed by a journalist of one the biggest women’s magazines in my country and had an awesome interview with her over the phone about my lipedema life. Despite the happy tone I thankfully requested insight prior to publication. Her draft said I had liposuction to fit into a size 10 again. I was also depicted as depressed, fearful and poorly informed about liposuction when I had my first surgery.My heart sank. Our book Lipedema – Help Hope Healing had just been published and I had a request out for a (partial) tax refund on liposuction treatments, still to be evaluated. My actual stand: I chose liposuction to improve mobility and reduce pain. This journalist was undermining my credibility and reputation. It took filing a complaint with her superiors for her to admit she had twisted my words. In the end a revised and approved article appeared in the magazine. Feedback was positive. I was ‘lucky’.
As more and more ladies step forward to raise awareness for lipedema I also see more of the good and bad of (social) media. Raising awareness is awesome and valuable, but it doesn’t hurt to think beforehand how far you want to take this and what to do with the haters out there. Please excuse the negative undertone, but it’s better to be safe than sorry with today’s online aftermath of all things public.
Raising lipedema awareness & privacyLipedema is about the limbs, but your legs run all the way up to your groin/underwear. Images of our legs serve an educational purpose, but images don’t need to include your face per se. I made the decision to never post images of my entire legs, because I don’t want my exposed legs to be the first thing people see when they google me. This may sound a little shallow to some, but I also have a business to run that has nothing to do with lipedema. If it’s just about showing what lipedema looks like, anonymous images are just as functional. That said, we all know that showing a person behind a condition has a lot more impact than an image of an anonymous body part. If it’s a conscious decision to reveal your legs in the media or on social media, I applaud your bravery and your support for the cause.
It’s not just about the hint of nudity that can be involved. Lipedema has a profound impact on our lives or has had that impact at some point. You don’t have to disclose every little detail in interviews, blogs or campaigns. It’s o.k. to draw a line somewhere, a line that suits you.Just remember: what goes online, remains online. Think about what you post or disclose and what could resurface even years down the line. Stay in control of the information about you online, best you can. That’s hard enough as it is.
Explore what you are signing up forAre you super proud of your lipedema curves? Congratulations! You wouldn’t want to appear on a show where they’re conveying the message you should be miserable and are in desperate need of an intervention. Or vice versa.
It can be more subtle than that. Poorly produced (social) media campaigns can be equally problematic. This by undermining your credibility and/or reputation and inviting a lot of negative feedback, which can take away from your efforts to support the cause.Despite the saying There is no bad press, implying all media attention can be used to your advantage, there is such a thing as bad press. Some media attention can be harmful, either for the cause or for you personally. So look into this beforehand and stay alert during interviews or the planning and production phase of projects. You don’t have to (fully) answer any and all questions or participate in anything you’re asked to join in on.
Request insight prior to publicationWhere I figured 4 rounds of uncovered surgery to seek improvement for a painful condition was enough drama to interest readers, the journalist I once dealt with was of a different opinion. The problem started after the interview, where the journalist decided to fill in some blanks based on quotes other people had made online. I could never have guessed this during the interview. Editing, interpretation, an editor demanding a different angle in retrospect: it can all affect the item, either good or bad. So, if applicable, ask to see a written piece prior to publication.
Sometimes your hands are tied. TV, for instance is different. We’re not Julia Roberts and can make only so many demands. It’s also not always feasible. I once got a last minute call from a newspaper if I was willing to do a quick interview and headshot to fill a blank space on a health-themed page. In that case deadline issues got in the way, but for a magazine, for instance, the timeframe generally allows for it. If not offered the option, ask.
Don’t feed the trollsTrolls, haters, self-appointed gurus and experts: be prepared to find all of them to respond to your story once it goes public. They become particularly active at the first sign of (assumed) weakness or a(n implied) request for help. With lipedema, fueled mostly by fat bias, they will happily tell you what you’ve been doing wrong all along, or that you’re full of it and simply overeat. Arguing with these anonymous types or those so convinced they are right is pointless. They won’t change their minds. So my advice here is: don’t feed the trolls by engaging with them.
SEO - Boosting the right things online for the causeIgnoring trolls is not just about being the bigger person. Not feeding the trolls is also about a little thing called ‘search engine optimization’. Search engines like Google, but also social media try to determine what the public wants to see. They release algorithms to do the math for them and determine what to show on social media timelines or what should be shown in what order in search results. Typical ways to add weight to an issue is to aim for a lot of responses and shared messages on the subject. When something goes ‘viral’, you hit the publicity jackpot and the message will spread across different media and social media platforms effortlessly. On a smaller scale these principles also apply. For instance, when you respond to or like a friend’s post on Facebook, it lingers a little longer in your newsfeed, giving more people the opportunity to reply.
This is where the trolls and the know-it-alls come in. When feeding the trolls by engaging in debate, you grow and enhance their platform. Their messages will only spread further and stay on top longer. They love that. They want you to respond, for them. If it’s toxic, leave it. It won’t help you or the cause you fight for. Then again, if you have a good thing going on social media, milk it! There’s also the good, of course.So what to do with a good message and trolls responding to it? You can still show support and boost the message by responding to the message itself or replying to positive reactions to it. That way you still don’t feed the trolls. Lack of engagement will make them lose interest.
Raising awareness can be fun! I met some amazing people and made friends that way. Raising awareness is a slow process and it takes heaps of exposure, but we can do this. It just doesn’t hurt to look out for yourself in the process.