Living with Primary Lymphedema

My Life as the Playground Monster

By Olivia Eggers

My body has never been my own. It has always been the property of those around me to take advantage of to their hearts’ content. I have been poked, hit, kicked, tripped, touched inappropriately, ogled at and whispered about for as long as I can remember. When I was sixteen, two drunk upperclassmen followed me to my bus stop after school, all the while making loud, nasty comments about my body and how I could “barely walk” as I hurried to escape them. This experience was not out of the ordinary, and I will likely continue to have experiences like this because of the way my body looks. 

I was born with primary lymphedema, a lymphatic condition that prevents the proper drainage of lymph fluid throughout the body. My lymphatic system is blocked up, prompting an excess of swelling around my body, predominantly in my legs, arms and face. It is a physically painful– and emotionally exhausting– condition that comes with a variety of risks and related illnesses. There are not a lot of readily-available resources for those with primary lymphedema; most research and writing done in this field is for those who develop secondary lymphedema (lymphedema caused by other health issues, most commonly breast cancer). In addition, most of the resources focus exclusively on the medical aspects of lymphedema and fail to address the psychological/emotional distresses of the condition. I have never, in my twenty-three years, read a story that is similar to my own. So I am writing this today with the hope that some young girl with lymphedema will read this and feel a little more seen. 

Being a kid who had a left leg that was three times the average size was not an easy existence. People are afraid of the unknown, and what could be more unknown than a rare lymphatic condition? Kids were cruel and adults were no better. My elementary school classmates were creative in how they isolated me; games of “Monster” during which the other kids ran from me were common. My peers were convinced my condition was contagious (it is not) and shied away from all physical interaction with me. I was six years old and I was already more than aware that I was an Other. To be touched by me was to be infected with something shameful and grotesque. Still I chased the other kids despite knowing that my participation further enabled their perception of me as alien. It was torture but I just wanted to be included. 

To say adults were no better is the understatement of the century. While adults were not running from me in childish games, they were still isolating me in their own harmful ways, often drawing unwanted attention to my body, usually out of concern and ignorance. Unfamiliar playground aids would come up to me at recess and yank– yes, yank – at my swollen hand to examine it. They would ask with plenty of fear in their voice, “What’s wrong with you,” which is never a terrific question to ask a person, especially a young, disabled girl. I was too ashamed of my lymphedema to respond coherently, prompting many unnecessary visits to the nurse. My parents had to train me to say, “I was born this way” when others would ask questions about my body. That statement helped prevent the needless trips to the nurse, but did not stop the bullying nor the shame I felt. To answer one question about my condition often led to a barrage of uncomfortable, invasive follow-ups. 

As I grew up, I found solace in some of my teachers, opting to spend breaks in their classrooms where I was safe from whatever torment awaited me on the playground or in the cafeteria. I spent a lot of time reading, finding comfort in fictional characters embarking on heroic adventures. Books provided havens to escape to, where I dreamed that characters like Annabeth Chase, Hermione Granger, and Meggie Folchart would accept me with open arms. 

Hiding my body became the most effective strategy to avoid torment. No matter the weather, I wore jeans that covered my compression stockings and further disguised the swelling in my legs. I learned to keep my left hand, my more affected hand, out of sight at all times. I quit team sports in middle school, partially due to a lack of interest but mostly because the team uniforms, particularly the athletic shorts, were far too revealing of my insecurities. I stopped putting my hair up and instead allowed it to dangle in front of my face at all times. Family members and teachers would comment with frustration on how they could never see my face and I would feel such an intense amount of relief. They couldn’t see my enlarged cheeks that swelled up to my eyes and elicited oinks from hallway bullies? Good, that’s how I wanted it to be. For photos that were taken of me, I hid my arms behind my back and made sure that my face was obscured. I was as invisible as I could get. 

The one place that I could not be invisible was the doctor’s office. The majority of the primary care doctors that I have seen have had no prior knowledge of lymphedema. My parents or I would always have to explain my condition and medical history. Most doctors were neither receptive nor helpful, and some were very critical. Time consuming, expensive and physically demanding treatment options were recommended to manage my physical care, but not once did any doctor ask how I was doing emotionally. I was a guinea pig that they were keen to poke and prod with no regard for my mental and emotional health. 

My experience with the medical system has been overwhelmingly negative. While I do not believe that all doctors are bad (I have met some phenomenal providers), I do believe that the medical system is inherently ableist and unempathetic. Almost every doctor appointment I have plays out akin to an intense job interview where I have to defend myself for being me. Many medical professionals take issue with my body, particularly my weight. 

When I was fifteen, I went to see my primary care doctor for a routine check-up and the normal tasks of taking my weight/height occurred. My doctor turned to me after calculating my Body Mass Index (BMI) and informed me that based off of BMI standards, I was morbidly obese. I asked her if my lymphedema could be part of the reason for my BMI as I have a ton of excess water weight that simply never goes away. She told me that my condition only accounted for a few extra pounds and the problem laid in my eating/exercising habits. Ironically, before this appointment, this doctor had never even heard of lymphedema, how could she have so confidently known how many pounds my condition added to my body? Nevertheless, her words stuck with me and spurred an eating disorder that I still struggle with eight years later. 

When I look back on these memories, I don’t feel angry at any of the individuals who treated me poorly. I cannot blame them for simply behaving as our society teaches. We, as people, are so afraid of anything that is not familiar that anything unknown threatens to dismantle the social boxes we’ve constructed for ourselves. But to be different is not negative, it’s the way that we view differences that can be negative. 

If we want to make changes as a society, we all have an obligation to try to unlearn the behaviors we’ve retained that are discriminatory and prejudiced. We all have internalized ableism (along with so many other isms) that we need to acknowledge and work to quiet. Just becoming aware of those self-contained isms is the first step to living a more accepting, kind life. Throw away your ideas of normalcy and open yourself up to new perspectives. We are all capable of being so much better. 

And to the little girl out there with lymphedema, you are not alone and you are capable of so much more than people give you credit for. Your body is yours and yours alone, and deserves all of the love that it can get. Be your most authentic self no matter what those around you think, because being true to yourself, messed up lymphatic system and all, is a form of everyday resistance. 

About the Author

Olivia Eggers is a legal secretary residing in the Boston area. She graduated from the George Washington University in 2019 with a bachelor’s in political science and women’s, gender & sexuality studies. She hopes to one day pursue a Master of Social Work with the goal of assisting formerly incarcerated persons in their journeys out of the prison system. Until then, she will continue to do all that she can to make the world a nicer, more empathetic place. 

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