'For Years, I Didn't Know Why My Legs Looked Different Until I Binge-Watched A Reality Show'

·8 min read
Photo credit: Jaclyn Ulman
Photo credit: Jaclyn Ulman

When I was about 9 years old and in the fourth grade, one of my friends asked me why I had "cankles." I didn't even know what that meant at the time. While I didn’t think too much about it, I kind of accepted the fact that I had them. I embraced the slang term and joked about them. But as the years went on, the shape of my legs and ankles became much more obvious to me, something seemed off. Regardless of any weight fluctuations, my legs remained in this weirdly different shape than my peers.

My worries didn't just have to do with how my legs looked. I also got bruises all the time and had no idea where they came from. They could be really painful to the touch, with a ton of swelling. The extra weight on my legs also made it harder for me to work out.

But no one could give me an answer. I remember going to see a doctor a couple of years ago, and she literally looked at my legs and asked, “Have your legs always been like this?” And I said, “Yes.” And she was like, “Okay,” and moved on. She had had nothing to offer me other than observing the fact that my legs looked strange to her too.

It wasn't until I finally suspected I had an actual health condition that all this stuff made sense. And I got to that point in a very unconventional way.

Photo credit: Jaclyn Ulman
Photo credit: Jaclyn Ulman

When I was binge-watching season six of Love Island, trying to fill my time during quarantine, I finally saw someone who looked like me.

One day when I was watching the castmates do a challenge while wearing super-short shorts and sneakers, it dawned on me: There was something about the way that Shaughna Phillips' ankles seemed oddly familiar to how mine looked.

After going down a Google rabbit hole about the show, too, and found that viewers often commented on her legs online (yuck, trolls!), and even Tweeted or commented on Instagram saying things like, “Hey, I think you might have this condition. You should see a doctor.”

Shaughna eventually did see a doctor, and it turned out she had a condition called lipedema.

Shaughna herself was aware of how she impacted the lives of women just like me. “Not only did Love Island change my life, but my time on the show also changed so many other lives of women who had never heard of this disease,” Shaughna tells WH. “Now they had a name for something they’ve been living with.”

In fact, all the initial information I got about lipedema was from Shaughna, her YouTube channel, and U.K. tabloids. I didn’t know how much I could trust this info, so I tried to find out as much as I could about lipedema via my own research too. I ended up learning a ton through Facebook groups, and I found so many valuable resources. There are tens of thousands of women in these online communities who have this condition and found each other to talk about it because there's so little information about it out there.

Photo credit: Jaclyn Ulman
Photo credit: Jaclyn Ulman

I learned a lot more about what the disease was, and that it's an extremely under-diagnosed condition.

Lipedema is a chronic medical condition characterized by a buildup of adipose tissue (fat) in the legs and arms, according to the Lipedema Foundation. Almost found exclusively in people who were born female, this condition affects about 11 percent of women worldwide, one study found. It can cause pain, swelling, and bruising. Because it's something that a lot of doctors aren't familiar with, many just dismiss it as women being medically overweight or obese. The meaning of lipedema is “fluid in the fat,” but it causes excess fat deposits that women have no control over.

I talked to my nutritionist, therapist, psychiatrist—literally everybody I possibly could. I thought, Let's do a bit of a deep dive on the things that I need to know if this is something I have. At that point, I started doing a lot of conservative treatments, like eating an anti-inflammatory diet. I thought, There's got to be a better solution.

Photo credit: Jaclyn Ulman
Photo credit: Jaclyn Ulman

About a week after I found out what lipedema was, I made an appointment with a primary care physician, and she had no idea what it was! A standard of care guide had just been published in Phlebology: The Journal of Venous Disease, which outlined treatments you should be doing, so I gave that to her. She told me, “I don't know enough about it, so I can't diagnose you. But reading the standard of care and seeing how the fat in your legs and the fat in your stomach are different, you probably do have this. You need to go to another doctor.”

She immediately recommended that I go to a surgeon, but I wanted to confirm my diagnosis first.

I found a doctor in New York. She gave me a very hands-on physical exam, and by the end of it, she officially diagnosed me with lipedema.

I left the appointment sobbing. Actually knowing that there was a name for something that I had had my entire life was a very overwhelming feeling and a huge relief.

I have what's called type one stage 1.5. There are many different types, and I, fortunately, have it in the early stages. I have what's called ankle cuffing, which was so crazy to learn because the first sign for me was the so-called "cankles" that people teased me about back when I was 9. Lipedema is something that is often passed down genetically.

While the doctor was pretty clear that conservative treatments can help prevent the disease from getting worse over time—because it's a very progressive disease—the only thing that can be done to actually get rid of lipedema is surgery. I had no desire to go under the knife, but I was coming to terms with the fact that I finally had a solution for this problem that I've had my entire life. If I didn't address it, it was just going to get worse. Still, my dietician, Tamar Samuels, RD, CDN, who is a co-founder of Culina Health, said while surgery does work, it's important to continue to implement changes in the diet, especially as they relate to fluid retention and inflammation. That's because if you put on too much weight, it will come back in other areas of your body.

I started consulting different medical professionals while continuing to manage the condition through my lifestyle. Eventually, I booked a surgery with Thomas Su, MD, a plastic surgeon with expertise in lipedema.

Photo credit: Jaclyn Ulman
Photo credit: Jaclyn Ulman

The procedure I needed was liposuction, which is medically necessary for people with lipedema as a permanent solution.

Liposuction can remove the affected fat, Dr. Su told me. The surgery could alleviate symptoms of pain, tenderness, heaviness, and fatigue, which are generally eliminated to “a very large degree if not completely.”

Even though I had no interest in surgery and, frankly, it was absolutely terrifying to me, I knew it was the right thing to do. Either I addressed this while I was still at a really early stage and it'd be easy for me to recover, or I let it progress to the point where it might be more difficult to treat at a later time. There are women who get to a point of being completely immobile with this disease. All that said, it could still continue to progress in other areas of my body after I do the surgery. I had to remind myself that this was not something that I was doing just because I wanted to, or because I wanted my legs to look different—I had to do this to take care of myself in the future, so I decided to get surgery done.

I had my first surgery to remove the lipedema from my lower legs, and it's going to take me a while to process the fact that I'm on the other side.

I have lived with this condition my whole life, and as I looked down at my new pair of legs for the first time, I couldn't help but feel like an imposter.

Post-surgery, Dr. Su stared at me, waiting for my reaction, but all I could think was, Whose legs are these? While the physical impact of lipedema has been partially taken away, the emotional and mental effects, and the inclination to blame myself for something that was never my fault, will linger for a while.

Photo credit: Jaclyn Ulman
Photo credit: Jaclyn Ulman

The more research that is done on this disease, the more doctors can correctly diagnose patients with this condition rather than just telling them they are overweight, and the more people speak out about lipedema, the better informed all of us will be. This can ensure we're making the best decisions for ourselves and our loved ones who have lipedema.

Love Island truly, and ridiculously, changed my life, and I hope that this story that came from me binge-watching reality TV can do the same for someone else.

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