Living with Lymphedema and the influence of social media | Juzo USA
November 2019

Living with Lymphedema and the influence of social media

Andrea Leifer, PT, DPT, CLT

Dr. Andrea Leifer is a physical therapist and certified lymphedema therapist in New York City whose mission is to empower individuals struggling with lymphedema to feel like themselves again. She founded Windrose Physio, a concierge lymphedema therapy practice providing house calls in New York City and video consults throughout New York state.

What if I told you I could predict how successful you would be in achieving your goals just by looking at what accounts you are following on social media? That your ability to start working out again, to eat well over the holidays or even to manage your lymphedema is influenced by what you read and see when you are scrolling through Facebook or Instagram?

The old phrase, “You are what you eat,” applies not just to the food we take in at meal times, but also to what we consume online. We follow Instagram accounts of people we aspire to be like or look like. We join Facebook groups full of people with shared experiences. While each online post and image has the potential to lift us up empower us, and encourage us to support others – social media posts also have the potential to bring us down, make us question our own self-worth, or reinforce thoughts of frustration we had offline. If we let it.

Social media mimics a neural network in the brainstem called the Reticular Activating System, which is a system that helps us figure out what is important and what to focus on. When we “like” a post online, Facebook and Instagram make sure that we see more accounts like that one as we scroll through one after another. This can lead to a series of inspiring images that help you take action, or it can lead to a game of comparison that your exercise plan isn’t good enough, that your cooking isn’t good enough, that your body isn’t good enough.

Whether you are newly diagnosed with lymphedema or have had lymphedema for years, this can be really challenging. Just searching for the word “lymphedema” can bring up images that are overwhelming to sift through or articles that seem to take away the hope of leading a normal life again.

I heard Amy Rivera, a lymphedema patient advocate (and now a good friend), speak in June 2019 at the International Lymphedema Framework Conference in Chicago, where she talked about how she compliments others. She would say, “Hey girl, I love your calves. That’s a great ankle!” because she always wanted to have an ankle, a calf, a knee.

Living with lymphedema can be isolating when all you see around you in person and online are ankles, calves and knees that look nothing like your own. Your lymphedema therapist assures you that you’re not alone, that they see plenty of people just like you with swollen legs or arms in their office. But where are they? Where are these other people that look like you? You haven’t seen them in your city, so how is this possible?

Since your goal is to reduce your swelling, you are always on the look out for what it means to achieve that goal. A leg with an ankle, an arm with a wrist. Your brain’s focus is on that and that alone, so it does not allow you to see others with poorly-fitting shoes or watches that are too tight because of swelling.

Yet, online you are confronted with images and stories about lymphedema, some better and some worse than yours. You read how some people are scared or others want to vent and are angry. You’ll see others who lurk in the comments section, constantly nagging, “You're wearing the wrong compression stocking, you should be eating better, you can’t do that for exercise.” This may bring up your own fears about lymphedema as you are constantly bombarded by posts online as support groups take up more and more of your Facebook wall each day. This can make you feel like you can’t do it, that it’s too hard, why even bother? You may want to leave all of the groups you so desperately wanted to feel a part of, because what is the point of finding others who look like you if it is all so negative anyway?

What if instead, you come across posts by Amy on Instagram? You see how she shares her wins and her losses against lymphedema, her strengths and her weaknesses as she finds a way of eating and working out that makes her feel better.

Maybe you then stumble into the Lymphie Strong community on Facebook and other platforms and find that there are thousands of people who are having challenges with their lymphedema but offer solutions and support instead of more problems. Maybe this is something you want to see more of, so now what?

Just as social media can influence you, you also have the power to influence it. You can change your online diet with a few clicks. If you need a break from Facebook or Instagram, you can disable or deactivate your account. This does not delete it, just puts it on hold until you’re ready to use it again.

If you need a break from one person or account online, you can unfollow or snooze for 30 days on Facebook or mute on Instagram. If you don’t want to see posts from someone that make you feel worse about yourself, you don’t have to and they will never know. You can always choose to follow or unmute them in the future.

You can then make changes for the positive. You can like or follow the accounts that motivate or inspire you to take action, to be better and to feel a different way. You can also follow a hashtag on Instagram if you want to see more similar accounts posting similar things, but you may not have come across on your own. On Facebook, you can hit see first so if you really love someone's posts, and they always posting great things that you enjoy reading, they will be at the top of your feed when you log in. You can even start to create posts so you can start to inspire others.

Once you start letting go of posts and accounts on social media that hold you back, and start letting in people and stories that move you forward, a goal that you once thought might be too hard might seem a little easier to reach.

Looking to find some inspiration on social media? At Juzo, we do our best to share your inspirational stories and provide helpful tips for managing your condition. Follow us on Facebook and Instagram, and be sure to comment on what you like or tell us what’s missing.

Abbe Buck commented on Nov 23, 2019

Dr Andrea Leifer, your strong, supportive words give me the will to live. I was starting to lose it just one year ago before my final diagnosis of Lymphedema. And I am now my old self, the Happy Warrior most days, although my days are challenging. My story is on Medium and on my The Bitchy Cripple blog. We All have our Stories. Now we have to write the next chapters and make them all good! It is the only was. Positive Outlook can mean a Positive Outcome. Thank you.

Sharon Romanelli commented on Nov 21, 2019

Lymphademia can give you a poor self image. I have had 11 yrs. Can't wear the clothes and shoes I want, but just want to manage the best I can. Getting support now i recently had cellulitis in left leg.


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