The Lipedema Foundation has published a blog post entitled “10 things you should know ” in an attempt to raise awareness about lipedema and how it differs from obesity. I have shared it on my Facebook page, and hope that it gives people a clue about what this condition means for those of us who have it. But when addressing the realities of present-day healthcare, this mild commentary approach is so inadequate that they might as well have skipped it. And when it comes to recommendations to those of us who have to deal with it, it’s positively laughable and shows such a privileged bias as to be functionally useless.

The statements about what lipedema is, what it is not, and the effects of having it are helpful. Perhaps some of the stigma of carrying giant fat deposits that cause the body to appear grossly misshapen will be lifted when people realize it’s not something that is related to personal behavior, nor can it be affected by conventional weight control means. And perhaps when people recognize the discomfort or even pain of the condition, coupled with the severe limiting of mobility that changes life forever, compassion will be triggered.

But when the “10 things” go on to discuss treatment, that’s where the focus goes soft. Until the medical community is loudly, raucously, and continuously called out for its ignorance and neglect, nothing will change.

The blog post comments that people are diagnosed according to clinical evaluation and patient history because there are no biomarkers or imaging tests. This is the functional equivalent of saying that people are not diagnosed, that they are consistently misdiagnosed—and to say that “can delay treatment” is the understatement of the century. This is letting the medical community off the hook too easily. Since lipedema is distinguishable by specific characteristics, such as prominent ankle “cuffs,” lobes of fat that crystalize and harden under the skin, and symptoms such as rapid weight gain with no concomitant increase in calories or decrease in exercise, this seems disingenuous.

It comments on the co-morbidities that may develop, but overlooks the fact that these co-morbidities might not ever get a hold on a patient who had been correctly diagnosed in the first place, instead of spending years arguing with serial doctors that the patients’ weight gain isn’t normal, that their symptoms are not in their heads, that everything can’t be fixed with a diet and a brisk walk around the neighborhood.

After mentioning all the ways in which lipedema is hard to live with (mobility issues, pain, chronic fatigue, brain fog, not to mention those co-morbidities!), it blithely states that “many individuals find ways to live well with this condition” (oh, yeah? you try it!), and then claims that there are many treatment options. There are not. There is a difference between “treatment” (something applied to a person from the outside that actually changes their state) and “managing symptoms” (something the individual has to pursue on their own with no guarantee of success), and the writers of this are well aware of that. They then give a laundry list of the therapies that can help, but fail to state that most of them don’t materially affect the patient’s present status but are rather designed to keep further deterioration at bay.

After that list, here is the recommendation: “Patients typically need a multidisciplinary team to address their condition and its associated co-morbidities, and many find significant relief and improved quality of life through this comprehensive care. Many patients find that engaging in some form of treatment on a daily basis is a crucial factor in a successful treatment regimen.”

Let’s break that down. We have already established that there is massive ignorance amongst the medical community, up to and including a complete unawareness of the condition of lipedema. We have further acknowledged that misdiagnosis is common—oh, say it like it is, it’s rampant. What is uncommon is to get a diagnosis at all, and it may take years of trudging from doctor to doctor, based on recommendations from others in like circumstances who have perhaps found someone who is willing to listen. But doctors are not educated about lipedema, and the majority, when confronted with its realities, are inclined to scoff that there even is such a thing, let alone that the fat person in front of them is suffering from it. I have explained the condition to multiple doctors and given them information to broaden their knowledge and bring them up to date, and only one has actually bothered to read it. So assembling a “multidisciplinary team” to deal with it is a joke.

There is no consistent form of care. There is no body of knowledge on which all doctors can draw. There is little interest by the medical community in compiling such a body of knowledge, except by a few researchers here and there who suffer from a lack of funding on top of the lack of interest. The first case of lipedema was diagnosed and acknowledged in the 1940s. It has been 80 years and there is still no comprehensive treatment or therapy protocol, despite the fact that 11 percent or more of women suffer from this condition. So how and from whom are we to assemble a team? And why should it be up to us to take this initiative, rather than reporting our condition to a doctor and having the doctor put together a protocol?

Now let’s address the final sentence in that recommendation, the one about patients finding it crucial to engage in some form of treatment on a daily basis, and see it for what it is: The privilege that comes with either comprehensive healthcare coverage or money.

In the past five years, I have gone to eight different doctors to talk about my condition, and out of those, two were marginally helpful. I have the good fortune to be able to pay for a supplemental insurance beyond Medicare, so most of my expenses for medical visits and some testing have been covered. But let’s talk about the rest of it.

I have paid for manual lymphatic massage sessions, more than $250 per session for 90 minutes, because my insurance won’t cover them. I desisted after six months because a. I couldn’t afford to go more than once every couple of weeks, which renders them fairly useless (daily or at least bi-weekly treatment is optimal), and b. my condition worsened to the point where I couldn’t drive to the closest licensed and qualified therapist, whose offices were in Pasadena, 30-some miles away. (Yeah, let’s talk about assembling a team. You have to find them first.)

I have changed the way I eat, because there are theories that various foods serve as inflammation triggers. Buying only organic food, primarily fresh food, and cutting out all prepared foods that contain those inflammation triggers is expensive. For instance, I no longer cook with or eat anything that contains such unstable and highly refined oils as corn, canola, soybean, palm-kernel, sunflower, or safflower. Next time you’re in a market, compare the price of “vegetable oil” (probably a combo of soybean, canola, or rapeseed) to a bottle of avocado or olive oil, and you’ll get the picture. The grocery budget has definitely increased.

I also, in my desperation to “fix” my health, have done a lot of reading about metabolic factors, thyroid malfunctions, the ill effects of cortisol, estrogen resistance, progesterone deficiency, and all the other possibilities that could be exacerbating my condition. In response, I have bought untold numbers of supplements guaranteed to fix my microbiome, conquer gut issues, tweak my cells, or support my liver or whatever body part is today’s culprit for making me sick. Vitamins are expensive; minerals are more so; and the various combinations being touted on social media as miracle cures are generally $59.99 a bottle for a 30-day supply. It adds up—not to health, mostly to bankruptcy, but it adds up.

For my therapeutic needs, I have purchased: a vibration platform; a massage gun; countless (and that’s no exaggeration) and varied types of compression stockings and tights, most of which didn’t fit right and some of which made my condition worse; velcro shoes and wide-legged pants; a year-long supply of bandages, gauze wraps, medical tape, and various antibiotic, antimicrobial, zinc- or silver-infused, moisture-conserving ointments to treat my lymphorrhea, a condition that evolved from having severe lymphedema, which is one of those co-morbidities that develop when lipedema hits; and a couple dozen Fabrifoam bandages in various widths and lengths to keep my legs wrapped, in order to push out the massive fluid build-up from the lymphedema in my legs and possibly reduce the fibroid pockets in the giant lobes behind my knees.

Where did all that money come from? Well, I am fortunate enough to have a small pension from my last 11-year career plus an annuity from my father that gives me a fairly basic standard of living, and I am also fortunate that, having lived in the same house for 40-odd years, my expenses are lower than most who live in Southern California. But these expenses have become onerous enough that I took my Social Security payments two years before I had planned, so that I could continue to pay my basic bills and be able to afford these other expenses as well. So “engaging in daily treatment” could potentially bankrupt someone who wasn’t as fortunate as I am.

The other thing mentioned in the variety of treatments is surgery. There being no cure for lipedema, and the condition becoming increasingly debilitating as it continues to grow fat on your body, the only real solution currently proposed by the medical community is lymph-sparing liposuction to remove the fibrotic fat pockets and open the lymph system back up to proper fluid elimination. But, that same medical community being as backwards as it is in acknowledging, let alone treating, lipedema, there is a high incidence of insurance refusing to cover costs for this kind of surgery. They consider it cosmetic. Getting Medicare to pay for it means hiring a firm of lawyers and waiting years to get permission, and without Medicare signing off, most supplemental insurances won’t pick up the slack, because they take their cues from Medicare as to what they will cover.

Furthermore, even if you can get approval for insurance coverage, many doctors who do liposuction are not willing to work with either Medicare or other insurance companies, so you then have a quest to find one who will. I know women who have traveled across the country and recuperated in a hotel room in order to access a particular surgeon who takes insurance. An extra year or two with lipedema in an active phase is devastating in the damage it does to the body, both directly and indirectly (triggering those co-morbidities), so people who have money simply pay for the procedure themselves. But it’s usually not a single session; many people with lipedema have between four and 10 surgeries to clear the fat pockets from various areas of the body. For those with no money, it’s impossible. For those with a little money, it’s a choice to run up your credit card balance, or invest your savings, your house down payment, or your retirement money to fix your knees, thighs, belly, and buttocks, and then hope that you can figure out some way to keep living afterwards with no cushion for when your roof leaks or you lose your job.

So yeah, I guess it’s good that the Lipedema Foundation is trying to raise awareness about this condition; but maybe they need to take a hard look at their “Happy Lipedema Awareness Month” suggestions (what Pollyanna came up with that? do we say “Happy” Cancer Awareness Month?) and ‘splain them a little more realistically to an oblivious and largely uncaring world.