After losing 350 pounds, Jaqueline Adan often felt frustrated that her legs still looked so big. If she asked her doctors why, they told her to lose more weight.
“I can’t be like ‘OK, body, now lose weight from your legs,’” the 36-year-old from the San Francisco Bay Area tells TODAY.com. “I remember doing everything. I rode the bike for hours. I had an unhealthy relationship with exercise at this point trying to get my legs smaller — and they never (shrunk).”
Over the past few years, she started re-gaining weight in her arms and hips, but it didn’t seem like normal weight gain. She often asked doctors why and they continued telling her to lose weight. Some followers on social media suggested she might have lipedema, a condition where fat tissue, known as adipose tissue, collects in an abnormal way under the skin, according to the Lipedema Foundation. After seeing a lipedema specialist, she received a diagnosis that she had an advanced stage of the condition.
“I started hysterically crying in his room,” she says. “It was a relief. Finally, someone has answers for me.”
‘My legs were always bigger’
Growing up, Adan often felt self-conscious about the size of her legs.
“My legs were always bigger than the rest of my body, and I struggled with my legs,” she says. “I remember even being younger and asking my doctors, ‘Why are my legs so big?’ and they, of course, were just like, ‘Well, you have to lose weight.’”
Adan lived in a larger body as an adult, and when she was 30, she started losing weight, eventually shedding 350 pounds. Even still, her legs never changed.
“I was like, ‘Why are my legs not getting smaller?’” she recalls. “I remember being in severe pain. My legs just hurt all the time. Walking was painful.”
Adan took what the doctors said to heart and began blaming herself for the size of her legs, telling herself that if she were skinnier, her legs would look better and be smaller. At her lowest weight, she still felt discouraged by how her limbs looked.
“When I got to my absolute lowest, my legs were still what they are,” she says.
She eventually underwent several skin removal procedures to reduce her excess skin. At first, Adan wanted to start with her legs because she hated them. But the surgeon told her she needed to lose more weight in her legs before that could happen.
Then, about four years ago, Adan began gaining some weight and noticed something unusual with how the weight was distributed on her body.
“It looked like there was a rubberband around my arms,” Adan explains. “I was in pain, and pretty much all the doctors were saying the same thing: ‘You’re just gaining too much weight and you need to lose weight.’”
Adan had been sharing her weight loss on social media and kept updating followers. When she took to Instagram to share, people would send her messages saying they thought she had lipedema. Armed with information, Adan asked her doctors if she could have it. Their responses felt discouraging.
“They were like, ‘Absolutely not, you’re just fat,’” she says. “It was completely shut down.”
Adan felt frustrated. Throughout her life, she’d struggled with losing and gaining weight. And she knew the way she was regaining weight was abnormal and something was wrong. But no one took her seriously because of weight bias, she says.
She began escalating her concerns. If a doctor couldn’t help her, she would if there was someone else higher up who could see her. She visited several specialists hoping for an answer before she finally decided to see a doctor who specializes in lipedema.
“He literally took one look at me and was like, ‘You have severe lipedema,’” she says. “Pretty much my whole body now was in a severe state of lipedema because of years of not treating it properly or doing anything about it.”
Lipedema
Lipedema, a chronic health condition, is not well understood. There are no diagnostic tests for it, according to the Lipedema Foundation, and often people are misdiagnosed, sometimes with obesity.
Vastly more women than men have the condition, which causes accumulation of unusual deposits of adipose tissue predominately in the legs and arms, according to the Lipedema Foundation. According to the Cleveland Clinic, signs include:
Pain
Swelling
Bruising
Skin that looks or feels like rice, peas, pebbles or walnuts under it
A heavy feeling in the legs
There’s no cure for it, but people with it often wear compression garments and undergo lymphatic massage to help with drainage to manage some symptoms, the Cleveland Clinic says. Patients might also eat an anti-inflammatory or a heart healthy diet and exercise because such eating patterns and exercise can reduce swelling, which can be beneficial. Liposuction can also be used to remove fat deposits from the body, which can improve mobility and reduce pain.
‘Living my life’
At times, it has been tough for Adan to hear the same old advice to about weight loss. She feels that if her concerns were taken seriously earlier, the lipedema wouldn’t have progressed so dramatically.
“Doctors have just classified it as obesity, which it’s not, and that’s where the confusion comes in because people are getting misdiagnosed all the time,” she says. “People continue to suffer because there’s not enough education. There’s not enough doctors. There’s not enough research.”
Adan shares her story on Instagram to raise awareness of lipedema to help others who might have it receive a diagnosis before it becomes advanced like her condition has.
Grappling with weight bias feels hard; doctors didn’t dig deeper into what she was experiencing because they thought she just needed to lose weight, she says.
Adan hopes to undergo liposuction to remove some of the fat deposits. Until then, she’s trying to love her body as it is and make life “work for her right now.”
“I’m doing what I need to do without feeling shame, guilt, frustration,” Adan says. “It doesn’t mean it’s going to be like this forever. But it means: What do I need to do right now, in this moment, so I can continue living my life?”
Adan has relied on wheelchairs in the past, for example to visit Disneyland, her favorite place, and sits when when she feels tired and has pain. She also regularly wears heavy compression garments on her arms and legs, which can be sweaty and uncomfortable. Still, she’s embracing life.
“So often we tell ourselves, ‘Oh I can’t do this now, but once I lose the weight, I’ll be happy. Once I lose the weight, I can go to Disneyland,’” she says. “Life is going to continue regardless, and so it’s making sure (I’m) still continuing to live life even during those difficult moments.”
This article was originally published on TODAY.com