Pretty Lymphedema

John Fuller Beckwith11/19/2024

To start, let’s be very clear: lymphedema is never pretty. It is a devastating chronic disease that even in mild forms is a daily burden, an unwelcome affliction to one’s body that no one would choose. It is difficult to hide and so while other chronic maladies are not apparent to people around us, lymphedema makes itself obvious with visibly swollen body parts or with compression garments as fashion accessories that take away from one’s appearance rather than enhance it, or with both the garment and the obvious body swelling both drawing negative attention.

But lymphedema can be more devastating for some than for others. The phrase, “Pretty Lymphedema,” is not mine but a term that occurred to one of my patients as she related that with her complex lymphedema it is almost impossible to get a purported lymphedema specialist to provide her necessary treatment. I am really the only lymphedema therapist in town that provides for her comprehensive care. Her lymphedema requires from the therapist more skill, more patience and more ability to adapt the care to the complexities of her situation. (I would argue this is why we have a license, to skillfully adapt our specialized training on complex individual cases in order to effect positive change) Her lymphedema and her larger health picture are more complicated. Many lymphedema therapists will only see patients who do not have complex medical histories, who don’t have co-morbidities or perhaps just one or two mild and stable co-morbidities. And let’s admit that many clinicians and clinics will preference patients with higher paying insurance. I am worried that when I retire in a few years she and others may not find the care they need. These less complicated, less advanced, pure lymphedema cases might be classified as, “Pretty Lymphedema.”

As noted above, no lymphedema is actually pretty and all lymphedema deserves focused and comprehensive treatment if it is to be addressed successfully. Individuals with less complex and less advanced lymphedema are as deserving of the highest standard of care as those with more complex presentations. No one actually has, “Pretty Lymphedema.”

But equally true is that persons whose lymphedema is more complex respond well to conservative treatment. This is not debatable, it’s a fact. Treatment that takes into account the impact of other factors may be nuanced or modified and treatment may take longer and be more involved – but it works. And let’s just be clear to say that persons with insurance that does not pay as fully, such as Medicare and Medicaid, still benefit equally from the skilled interventions. I and my patients with complex health histories are often very pleasantly surprised to see that the improvement in their lymphedema results in improvement in the co-morbid diagnoses as well. Some anecdotal examples are: improvement in cardiac function, lessening of peripheral neuropathy, healing of wounds and less recurrence of chronic wounds, improved dyspnea, not to mention traditional functional improvements such as easier transfers, less pain with walking, greater tolerance of walking longer distances.

Lymphedema is a complex diagnosis that includes the milder presentations with no complicating medical or social factors, or it can be just one of many medical challenges in a single case with those co-morbidities making treatment of the lymphedema more of a challenge. Comprehensive conservative treatment works in all these various presentations, and works well. Lymphedema therapy providers shouldn’t be only choosing the easy cases, the “pretty” cases, but should realize they have a special skill that can positively impact even the most complicated presentations. These more complex patients should not go untreated which is what happens when clinics only see, “Pretty Lymphedema.”