Reflections on World Lymphedema Day

Living with a chronic condition often means making decisions most people never have to think about.

Each year on March 6, World Lymphedema Day raises awareness of lymphatic diseases and the people living with them. A few days later, I find myself reflecting on the conversations and experiences that come up again and again in my work.

As someone who works with lymphedema patients every day—and as someone who lives with secondary lymphedema myself—I tend to come back to three things.

The gap in lymphatic education

Even today, many medical providers receive very little formal education about the lymphatic system. That gap sometimes shows up in ways that can directly affect patient care.

Recently, we were referred a patient who had been advised to wear daytime compression continuously for several days and then take a break from compression altogether. Other patients arrive having been told to use “Ace” bandages—a far cry from medically appropriate short-stretch bandaging used in clinical lymphedema care.

Recommendations like these reflect a misunderstanding of how different compression systems are designed to function. Daytime garments, nighttime garments, and short-stretch bandaging each serve different purposes, and how they are used matters.

Lymphedema management isn’t simply about “wearing compression.”

It’s about the right compression, used at the right time, for the right situation.

The fatigue of self-advocacy

Many people living with lymphedema spend years explaining their condition — to providers, insurance companies, employers, friends, and sometimes even family members.

Advocacy fatigue is real.

There is also the quieter fatigue of daily symptom management: monitoring swelling, adjusting activity levels, wearing compression, and responding early when changes appear. This ongoing work is rarely visible.

Managing a chronic condition often requires a tremendous amount of attention, discipline, and patience, with much of it happening behind the scenes.

In many ways, these ongoing decisions become part of the cognitive load of living with a chronic condition — the constant mental calculations required to protect one’s health. Thoughtful systems of care can help reduce that burden for patients and caregivers alike. (You can read more about this idea in our post Systems are a Form of Care.)

The quiet decisions people make

Sometimes choosing not to do something is an act of self-care.

There are invitations I decline — outdoor summer events like daytime park picnics without shade, or even serving as an accountability buddy for a friend’s hot yoga class — because I understand the physiology of lymphatic swelling and I know how my particular body will respond.

I also know that if swelling develops in my arm or flank, it may take weeks of diligent care to settle back down.

People living with lymphedema make these calculations all the time.
Most of the world never sees them.

It’s not that I don’t want to go.
It’s that I’m making an informed decision to protect my health. It is part of my self-care.

Self-care, in any context, isn’t indulgent. It is a form of self-respect.

One of the quiet realities of living with a chronic condition is learning to make these decisions — even when no one else sees the calculation behind them.

Author’s Note

Rebecca Smith is the Founder and Clinical Director of Body Craft Massage Therapy in New York City. She is a NYS licensed massage therapist and Certified Lymphedema Therapist specializing in oncology massage, lymphatic therapy, and supportive care for people navigating cancer treatment, surgery recovery, and chronic health conditions.

Rebecca also lives with secondary lymphedema, giving her both clinical and lived insight into the challenges patients face. Her work focuses on helping clients manage symptoms safely while restoring a sense of agency and support in their care.