Does Lymphedema have a Weight Stigma Problem?

John Fuller Beckwith5/14/2025

A sizable cohort of the lymphedema population are persons who are overweight. There seems to be a push to view these cases through the lens of addressing the obesity first and even to frame the lymphedema in these person’s as secondary to being overweight. This creates two very real problems: the first is that the individual is thrust into the distorted perspective of weight shaming and moral failing for causing their lymphedema, and the second is a result of the first, which is to avoid seeing and treating the actual lymphedema. So the short answer is, yes, lymphedema treatment has a weight stigma problem.

Stigma has a number of different definitions including: a mark of disgrace, a set of negative and unfair beliefs or prejudice about a person or a characteristic or an individual quality. Stigma leads to discrediting, devaluing or excluding based on a real or perceived difference. This difference from a perceived norm can become negatively shaped by cultural beliefs and stereotypes (from CDC). Synonyms for stigma include: stain, blemish, shame, disgrace, dishonor, discredit, disrepute, blot, slur, smirch, scar, reproach and even immorality and sin.

The impact of weight stigma in health care is well documented and shown to be far reaching, contributing to health disparities through its negative effect on individual health status and as a barrier to access and delivery of quality healthcare service (from the CDC). When patients feel judged or stigmatized about their weight, this can lead to lower trust in their healthcare providers, poorer quality of care, and avoidance of healthcare (from UConn Rudd Center). It makes sense that this can become a self-reinforcing cycle: weight stigma, poor health interventions based on bias, self-shaming, depression, poor self-care, followed by more of the same.

A large part of the very real problem with excessive focus on weight and BMI is that many persons with lymphedema who admittedly are overweight, in fact have been misdiagnosed. Which is to say long developing and progressing lymphedema has gone undiagnosed for years or decades. And I would say misdiagnosed to the point of real harm to their health, a harm that is not of their own making. Many, many of the patients I have seen over the years have morbid obesity listed among the diagnoses on their medical history, however they don’t have lymphedema among the listed diagnoses. Yet when I do their exam and further work with them during the intensive treatment phase it becomes apparent that much of their actual weight and the increased size of the hips and lower trunk are in fact lymphedema (which obviously contributes to their BMI). This is where the obesity scolds will say something along the lines that the obesity caused the lymphedema I am seeing in the clinic. In point of fact this is an unknown, should not be stated with such certainty and therefore can not be assumed. But more importantly we have to consider a different but very realistic scenario: that the lymphedema came first, it was ignored and never addressed, so progressed and perhaps the individual subconsciously allowed for further actual weight gain. I have seen patients with a BMI over 50 who after long and challenging treatment had reduced their hips and abdomen along with thighs and calves, revealing that most of the supposed obesity diagnosis was in fact lymphedema. Many patients will report that the lymphedema preceded their weight gain.

At this point I suspect obesity scolds may have worked into a bit of a lather. Please try to relax. It is important to keep everything in perspective. Of course obesity is not healthy and it warrants focused attention from health professionals. In many lymphedema patients with obesity a compassionate and supportive effort to address the obesity is indicated. But context is the issue: when obesity is the label and the focus, other real medical issues are either not seen due to the provider not looking past the obesity or these other medical issues are seen only in relation to the obesity and often as a sequela of the obesity. This is the point, that lymphedema should be brought out from behind the shadow cast by an obesity diagnosis, it should be seen as a distinct diagnosis. While there may be some overlap between the obesity and the lymphedema, crucially, the lymphedema needs to be treated without delay and as its own entity.

We see these new and highly marketed lymphedema treatment centers that focus on lymphedema paired with obesity. They all have these strict guidelines tied to BMI and when the BMI is over 35 or over 40, the patient is guided to the bariatric surgery first and then the lymphedema treatment only after the surgery is done. This is not the exception but actually the more common occurrence. This is just my opinion, but these centers that push the bariatric surgeries and the different lymphedema surgeries recognize that these surgeries are profitable, more profitable than providing gold standard conservative therapy. Ergo the threshold for doing the surgeries is the relatively low BMIs of 35 or 40. The result of this is that the surgeon takes the lead in addressing the lymphedema and the therapist works at the discretion of the surgeon. This is backwards in my opinion. As I note below, even patients with much higher BMIs respond very well to conscientious conservative therapy.

Just to put this in proper context I should share my experience with actual patients. These few examples are not dramatic exceptions but rather the common rule. What is seen with these examples has been repeated month after month, year after year in my clinic. Just the other day I spoke with a woman with apparent lipolymphedema (she did not know what was causing her legs to be large, but that is what she was there to find out) who shared that, as we can all guess, she had worked to lose weight but lost it in the upper body without reducing size in the lower body. Her leg size will fluctuate with activity and elevation. This had been the pattern for decades. She had been told all of this was due to her obesity. She teared up when I told her this was not her fault and therefore not a moral failing, but rather a disease. She had for years felt she was somehow at fault. She had been stigmatized by the system. I have many patients with BMIs greater than 50, some greater than 70, who know very well they are obese and don’t need me to further beat that issue for them. They get it. But what they don’t get from their care providers until they see me is that the lymphedema is not obesity. This should not be difficult, yet they have been told over and over by their medical providers that the growing size of their feet and calves and medial thighs is simply the progression of obesity. Let’s be very clear here: that obvious stage III lymphedema with papillomatosis and hyperkeratosis and lymphorrhea was determined by the ‘experts’ to be merely a progression of their obesity. And to be more clear: it is not obesity. Then I treat them and the lymphedema reduces, dramatically in most cases. They lose 10, 20, even 50 lbs. They see themselves differently, they regain mobility they had lost, pain is much less, they engage in social activities they had been restricted from, they go out in public with more confidence. And once they can distinguish the lymphedema from the obesity, they can more clearly see and focus on the obesity.

I propose that weight stigma is prevalent in lymphedema care. In our field the focus is over-weighted (pun intended) to diagnose and treat obesity. When treatment focuses first on weight loss this implies, in many cases falsely, that the obesity is the cause of the lymphedema. When the message is that the obesity is the cause of the lymphedema, not only is there the stigma associated with the obesity, but then also the lymphedema itself is stigmatized as a personal failing since the message is it is also a consequence of bad choices or poor character. This is wrong. Lymphedema is a disease and is not the fault of the person afflicted with it. It is not a moral failing, a mark of disgrace or reason for shame.

I am not saying here that the obesity doesn’t matter and shouldn’t be treated. Of course it needs to be addressed. The point is this all can be boiled down to: Treat the lymphedema first. Lymphedema in persons with obesity is eminently responsive to conservative treatment, often making dramatic reductions in size and appearance. When the individual sees that the lymphedema is real, and can be reduced, and their BMI has already come down, they will have a more positive outlook and may be more prepared to make the changes needed to begin addressing the obesity.