Trigger warning: There are some mildly graphic images of swelling / wounds below that may be uncomfortable for some.
By and large, I am an aggressively pro-science person. My default nature is to trust medical and scientific expertise. I don’t think the scientists are out to get us. I don’t buy into conspiracy theories or deep-state nonsense.
I’m also fairly dismissive of hypochondria. It’s easy to Google your own symptoms and come up with the worst-case scenario — something that isn’t helped by the popularity of TV shows like House, MD and Grey’s Anatomy, where the medical cases tend toward the exceptionally rare, absurdly unlikely diagnoses.
I don’t look for zebras. And, generally, I trust doctors when all they see are horses.
When the stripes start showing up.
I’m really fat. The kind of fat that stops traffic so people can stare. The kind of fat that, if I wore a Goodyear shirt, small children would be excited about seeing the blimp so up close. The kind of fat that has to perform a risk-benefit analysis before sitting in an unfamiliar chair.
I’ve been fat since I’ve been a year old. My weight is a runaway train I’ve been trying to control my entire life.
When I see a doctor, I expect to hear that I need to lose weight. Because it’s true. It’s certainly at the root of a lot of my problems.
But, over the last year, something else has been going on.
On October 22nd of last year (I remember the date because it was the day after my birthday), I got in the car to go to an appointment with my bariatric surgeon. As soon as I pulled away from the curb, something was wrong.
I couldn’t work the pedals like I usually could. My leg was too large for the space underneath the steering wheel. I couldn’t maneuver between the gas and the brake correctly.
I managed to get around the block without it being too big of an issue. But it was a close and unfamiliar thing. At this point, I’d had some swelling in my lower leg for quite a while, including some open wounds (which would proceed to get worse over the next few months), but this was the first time that my driving ability was impacted.
Over the next six months, I’d be in and out of the hospital four different times, mostly because of the swelling in my leg. At first, it was managed pretty well with a change in my diuretics, helping get some of the water weight off. But after a few months, the swelling came back.
And there was a new feature that wouldn’t go away: a large lump on my thigh, just above my knee. Hard to the touch, no pitting when I touched it, and it started getting bumps and boils over the surface of it.
If your first thought is Wow, that looks like it makes walking difficult, you’d be absolutely right. Over the last several months, I’d had more and more difficulty with walking around. After losing nearly 100 pounds last year, I felt so much better! I was able to get around so much easier. But when all this swelling came back, it swung hard the other way.
Right now, I can’t go more than a few steps without losing my breath. It’s hard to get upstairs. It’s hard to bend over. I have severely reduced range of motion in that right knee. The only pants I can fit my leg into are sweatpants, and even among those, only the extra baggy ones fit. Even something as simple as going to a doctor’s appointment is an effort. I’m exhausted much more easily.
When I bring this up with any of the doctors I’ve seen, can you guess what I hear? You need to lose weight.
When I try to mention that this is something different, something more at play, that my baseline is far below where it usually is, it’s like they don’t hear me. When I point out the gigantic lump on my leg that’s impacting my quality of life, they say, oh, that’s just the lymphedema.
After my last hospitalization, the hospitalist sent me back to the wound care doctor, who sent me to the lymphedema clinic. Neither of them had much to say about the large lump on my upper leg. They were more concerned about open wounds on my lower leg.
And I understand it. It looks pretty scary.
The swelling is bad. The wounds are ugly and constantly leaking. And they haven’t closed up. They won’t close up until the swelling goes down.
And, unfortunately, the lymphedema clinic wasn’t all that much help. Dragging myself to the hospital twice a week for massages and having my legs wrapped up to the knee (again, ignoring the gigantic lump).
And I get it. The open wounds are a huge risk. The swelling needs to go down. But the elephant in the room, the thing that’s making my life more difficult, that’s making it more difficult to walk, breathe, dress, and live a normal quality of life, is the gigantic lump.
When I asked if the lymphedema wraps and massages would help with the lump, the lymphedema therapist gave me a dismissive response: Lymphedema doesn’t go away. You need to learn to live with it.
I need to learn to live without being able to walk or breathe, or do anymore than waddle down to my computer and back upstairs at night? It didn’t strike me right.
So I started zebra hunting.
When I first started looking on Google, looking around to try to find something that fit my symptoms, I felt like one of those out-of-control patients on a TV show, trying to convince the doctor that their garden-variety cold was cancer.
Maybe I’m only in denial. And the more time I spent looking without finding anything, the more I thought that might be the case.
However, my dear friend Christina M. Ward found the zebra I was looking for.
Massive localized lymphedema (MLL) is a large pedunculated lymphadematous mass found in the lower extremity of morbidly obese patients. MLL often enlarges over many years and may interfere with mobility. The overlying skin often exhibits induration and a peau d’orange appearance, consistent with chronic lymphedema. The mass is painless, and often the only presenting complaint is interference with gait. — The Canadian Journal of Plastic Surgery
As soon as I read the first article, I started thinking this could be it. This definitely could be it.
In the week or so since talking to Christina, I’ve read just about everything I could about MLL on the internet. There isn’t much out there. The first reference in medical journals dates back to 1998, and everything I’ve read talks about how rare the condition is — albeit warning that it could become more common, as the so-called “obesity epidemic” becomes worse.
But, even as I read, I was resistant to the idea. Surely, if this is what was going on, one of the doctors would have said something. Or the lymphedema therapist, whose job revolves around knowing lymphedema inside and out. Somebody, out of the dozens of doctors I’ve seen, including specialists, would have said something.
But maybe it’s just that rare. Perhaps, there’s a chance that, in this town of 10,000 people, none of the medical staff are familiar with a condition that’s described as exceedingly rare.
Or maybe I’m just being a hypochondriac.
I’m not sure of what to do.
I don’t want to be the crazy patient that walks up to their doctor with a zebra, when it turns out that I’m just fat and trying to find a way to rationalize my fatness.
But even as I type that, it doesn’t seem right. Because my experience of what’s going on is so different. Ever since this lump on my leg has cropped up, it’s made my life so much more difficult than simple fatness ever has.
I also don’t have the energy to go fifty rounds with the doctors here. Even going to one appointment is exhausting, and I don’t want to have to bounce around from doctor to doctor to doctor while trying to get some answers.
I’ve already done that. And it hasn’t gotten me anywhere.
On the other hand, though . . . I want to be able to walk normally again. If this can be treated, I want it treated, before it becomes as bad as some of the examples in the medical literature. (Some of those pictures are very scary.)
But it feels like every time I tilt with the doctors, I end up losing. So I don’t know.
Zach J. Payne is, to borrow the words of Lin-Manuel Miranda, “a polymath, a pain in the ass, a massive Payne”. He is a thespian, poet, and writer for young adults. He is the #2 Ninja Writer. Raised in Whittier, CA, he currently lives in Warren, PA.