The challenge here is to bring years of lymphedema struggles into a compressed version, so that you can comprehend my journey as a lymphedema patient. How can I explain it? I’ll start at the beginning, when I was 16 years old. After an allergic reaction complete with full body swelling, not all of the swelling dissipated and the lower left extremity remained swollen. It took no less than 10 doctors and six months of traipsing to various specialists before a childhood rheumatoid arthritis specialist placidly informed me I had something rare called primary lymphedema in both legs up to my hips. I remember feeling intimidated but thinking, “Okay, this doesn’t sound bad.”
Fast forward to three months later. Upon completion of my first lymphedema physical therapy appointment, I walked out into the Phoenix heat in full compression bandage down both legs. Walking out into 100 degree heat in those layers upon layers of wraps and foam, the overwhelming reality that this is what lymphedema looks like dawned on me. Contrary to my first impression, this wouldnât be an invisible condition. The heavy bandages on both of my legs physically assured me otherwise. I would ALWAYS need to be compressing my legs. The alternative was that the swelling wouldnât be maintained and would slowly accumulate. This wasnât going to be temporary, this was for life.
This news of this chronic condition spread among family friends quickly. A very well intentioned sympathy card was sent to me, citing my recent bereavement of the loss of being “normal” and their sadness of my lifelong diagnosis. I remember how shocked I was to receive that kind of card over a medical diagnosis. I was struggling with confusion, fear and anger, and this ridiculous card only underscored that. I had so many doubts then, could I actually control this? What will this look like for me in a decade? In two decades? What would pregnancy look like?
At 24 years old, I looked at the scale and the shape of my legs, hips, torso, and realized, “Well this is the day I acknowledge that lymphedema has gotten ahead of me.” In my early twenties, fueled by those fears and insecurities and I had not worn compression to the level or frequency I needed. I ignored the truth of lymphedema, and beyond everything else, I had allowed myself to be intimidated by the cost of maintaining.
The problem I faced was that that the cost of maintaining is steep. I need at least two pairs of custom compression tights a year (about $1000 total), yearly sets of toe caps to manage the swelling in my toes (about $800) plus a lymphedema pump on back-up (about $6000 every ten years). Not to mention the cost of the check in with my lymphedema therapists. Insurance has hardly mitigated or covered the cost in total over my first decade since diagnosis.
Currently, I have the toe caps, and I have two pairs of custom compression garments. I have a full set of compression bandages/foam, and the lymphedema pump. I manage my weight with intermittent fasting, and a personal trainer. I’m familiar with how to care for my skin to prevent infection, and I check in with my lymphedema therapist team once or twice a year. I see a psychologist to help manage to emotions that come with a diagnosis like lymphedema. I’m quite fortunate to be a well-equipped lymphedema patient.
Allow me to be clear though about what a well-equipped patient looks like for me financially. What I mentioned above is easily about $8000 worth of medical equipment/devices, including the compression pump. Every year, for new compression garments, it’s about $1500 a year for proper, custom garment to do what my lymph nodes cannot do on their own. My parents help absorb the cost since I’m currently a student, but they can’t do that for forever and they shouldn’t have to.
I’m 25 years old now, and finishing my college degree in a year. I come off of my parents insurance later this year. I cannot afford lymphedema care on my own. But the ability of whether or not I can afford lymphedema care products, never undermines the reality that I need these things every single day. I will never have a lymphedema free day.
The cost of lymphedema, and the stress of trying to work with insurance to have it covered add to the burden of a lifelong condition. I want to be responsible and capable of my own medical care.
Having lymphedema be actually affordable through insurance would enable me, as the patient and as an adult, to be autonomous in my care of myself. To be able to afford compression garments without thinking, how will I take care of my other needs like groceries or textbooks? Do I need to use my compression garments for an extra six months past their use date so I can wait to afford this?
Every day I slide on my compression tights, I resolve not to be a patient who receives sympathy cards because of lymphedema. When I use the compression pump, I’m committing to be in charge of maintaining my body so I can accomplish all the things I dream of doing with my degree, the things I dream of doing with my life.
I’m on this path of maintaining, but I as the patient, need the affordable lymphedema care to get to where I’m going.
