Here is what happens when doctors remain uneducated about your specific condition for more than 85 years after the first mention of it in a medical journal: You start taking advice from people on Facebook.

Lipoedema was first mentioned in medical journals, as far as I can discover, in the 1940s. And there is some small progress in knowledge about it in Germany; but in this country and most others, no one knows the name. Everyone to whom you say it responds Oh, yes! Lymphedema! and you have to laboriously explain that while lipoedema often triggers lymphedema, that’s not what it is at all.

And because it is about 95 percent a women’s condition, and because it’s genetically linked to hormones, and because it’s also a condition that makes you immensely fat, no one cares. Think that’s a radical exaggeration? Try going to the doctor and telling him* that you’re not fat because of what you eat or how little you exercise but because of a genetic condition. I guarantee that you will be going home with a diet sheet, an exercise plan, and an admonition to lose weight. Yeah, because that will solve all your problems.

So…you start looking elsewhere for solutions. Searching the word “lipoedema” online finds half a dozen Facebook groups formed by women as desperate as you are to figure out what the fuck to do about this condition that has taken over and ruined your life, and also about the effects, which inevitably include lymphedema as an after-effect. There are discussions about wearing compression socks or stockings or wraps, pro and con, and if pro, what kind, how much pressure, how much coverage, how many hours a day, what works and what doesn’t and why.

People talk about fluid consumption and exercise and diet, endlessly diet, because despite all evidence to the contrary, we still think we can affect things by watching what we eat. In some cases it can help—for instance, eliminating seed oils from your diet can reduce inflammation. Sugar is a big trigger for some, while for others it seems to have little effect. There are the gluten-free fanatics, the protein-only apostles, and the intermittent fasting devotees. I have tried it all. Nothing works.

We buy stuff that is supposed to make a difference. Massagers, compression pump pants, red light therapy machines, vibration platforms. All of them do a little. None of them makes much difference, but we debate them endlessly on “our” pages, sharing information with one another in the hope that someone knows more than we do and can help us.

But the toughest part is how Facebook and Instagram and other platforms allow people to prey on our disability by trying to sell us on the one thing that will permanently solve our problems and turn back the clock to when we were slim and mobile, unaffected by either misplaced and rampantly growing fat, or chronic swelling of our legs.

And we read and hope, and invest our paltry “extra” money in these solutions because lymphedema, once it’s got hold of you, is almost worse than the lipoedema that’s causing it. Carrying around 10-20 pounds of extra fluid per leg is like wearing six-inch-thick fuzzy leggings—or dragging around a couple of cement blocks wherever you go. It affects everything—foot pain, knee instability, hip pain, balance, the ability to stand upright for more than a few minutes at a time, the way you sleep, the way your clothes fit (or don’t), you name it, it’s affected.

I have fallen prey to my fair share of these remedies. Provitalize is supposed to fix all your pre- and probiotic needs, which magically clears up your lymphadema. Nope. Heated, vibrating pads that you stick on various parts of your legs are supposed to stir up the fluid and let your body eliminate it more swiftly. Uh-uh. Beltwells will force that fluid out. Sure, for as long as you wear them. Take them off, and 20 minutes later it’s all back.

Lately there’s a whole new round of remedies. The premise of these is that if you have had chronic lymphedema for years (like I have), the fluid in your lower legs is no longer fluid but sludge, and it takes specific herbs to go in there and break it up so your body can clear it out. The problem is, that sounds completely logical. The other problem is, the stuff they want to sell you costs $79 a bottle for a 30-day supply, and it cautions you in 4-point type that it may take as much as three months to have an effect. By the time you figure out that it won’t, you’re into them for a minimum of a few hundred dollars.

And of course, every ad sounds absolutely certain that their combination of herbs is the one—but there are at least five different combos out there that I’ve seen.

Echinacea purpurea, dandelion root, Bromelain, horse chestnut, red clover, burdock root, yarrow, cleavers (what the hell is cleavers?), all in some combination are supposed to “fix” you.⁣ Half of these I can’t even take, because I’m on a blood thinner for clots and they further thin the blood, so…yeah.

Another new one is the miracle of magnesium, but only a specific combination of all eight kinds of magnesium, and only in an oily spray that you spritz onto your feet and legs, because if it goes through your digestive system, you lose 90 percent of the effects.

I could spend my entire pension check on these remedies and, in the past, I have done a pretty good job of significantly depleting it. The true tragedy of it is, maybe one of them is real. Maybe one of them really would help me. But at this point, after five years of trying various remedies, I am so cynical that I will never discover it because I have learned to discount the possibility before I spend the money. Which is probably the right thing to do, but…what if it’s not?

Here’s a bigger what if. What if people in the medical community decided that this secondary condition—and the primary one shared by more than 11 percent of women—was a subject worthy of serious, prolonged, concentrated research? What if there were studies on lipoedema and lymphedema that rivaled the frequency and intensity of the studies of everything from inflammatory bowel disease to psoriatic arthritis? What if doctors noticed that not all lymphedema is caused by cancer or diabetes and quit having a knee-jerk reaction to it? What if they made the connections between estrogen and cortisol and thyroid to so many conditions suffered exclusively by women?

What if that magnesium spray is the magic bullet? Yeah, I still want to believe.