As soon as I got my lipoedema diagnosis last year, tears rolled down my cheeks.
For years, doctors told me that I was ‘just fat’.
But finally a medical professional had confirmed my disproportionately large legs were a medical condition – an extremely painful chronic disease that causes fibrotic fat to accumulate in the lower part of the body, over which the patient has very little to zero control.
It was the validation I’d waited nearly 30 years to receive.
When I was 12 years old, I began noticing distinct changes in my body. I quit wearing shorts or swimsuits and avoided all activities where I was expected to show my legs. Whenever I looked at them, I felt deeply ashamed and disgusted with myself.
By age 14, I was so ashamed of my big legs that I convinced my parents to let me have a free consultation with a plastic surgeon.
Back then, I was 5 foot 6 inches (170cm) tall and weighed roughly 135 pounds (61kg), the majority of which were within my legs. I was so ashamed of them that I felt like a monster. I was only a child.
The plastic surgeon never mentioned lipoedema. He told me I was too fat and would need to lose between 20 and 40 pounds if I wanted to become a liposuction candidate. ‘Ideally 40,’ he said.
That’s what he told a 14-year-old girl.
I desperately needed to know why my legs were so abnormally large. Instead, I left that office with an internalised message that would shape each and every following day of my life: ‘I am too fat. I’m doing something wrong. It’s all my fault.’
I entered adulthood apologising for my body and dating men who preyed on these insecurities. I held back in life and made most of my decisions out of fear.
I developed disordered eating habits and yo-yo diets. Despite losing 100 pounds on two occasions, my legs remained disproportionately large.
Eventually, I’d burn out on eating under 900 calories while watching my legs remain too fat for most jeans. I’d regain the weight, thinking I had no discipline or willpower.
How else could I explain why my legs grew so large and maintained such odd proportions? Few people understand what lipoedema is.
It was only at the age of 33 – after my daughter, Sophie, was born – that I began to Google ‘tree trunk legs’ and finally found out about it.
It turns out having lipoedema generally makes pregnancy worse and giving birth happened to coincide with my body ballooning to a typical lipo-lymphedema shape — unusually round all over. I was desperate to understand why my body was changing.
By that time, lack of a proper diagnosis had robbed me of my quality of life and I weighed over 400 pounds (181kg).
This is what happens to many lipoedema patients. Most learn about it online before we get a diagnosis. Even then, the information may come too late – I didn’t realise surgery was an option for me until early 2021.
Most lipoedema patients will require one or two liposuction surgeries. Advanced patients will need three or more, and often, skin removal surgery as well. Many patients like me will travel across the country to see their lipoedema surgeon because there are so few doctors or surgeons who understand the disease.
Sadly, my untreated lipoedema progressed into lipo-lymphedema, which means my lipoedema tissue became too crowded and damaged the lymphatic system, leading to lymphedema on top of lipoedema. A disease on top of a disease, which in itself is painful, debilitating, and expensive to treat.
My lower legs also continue to swell up without class III medical-grade compression.
Lipoedema patients are advised to get flat knit garments, like custom made knee-highs, thigh-highs, or leggings. Since I have to wear them 24/7 to help contain my swelling, I need more than one pair.
After my diagnosis in 2021, I began blogging about my experiences, hoping to raise awareness of lipoedema and the dangers of letting it progress. Many women have since written to me to say thank you because it helped them realise they have lipoedema too.
When people read blogs from me – a very fat person talking about their unbearable health struggles – it’s easy for them to assume I’ve done this to myself. I know that isn’t the case.
But I wonder how many other fat patients might never get the medical care they need because people – including the medical professionals they turn to for help – believe they’re ‘just fat’.
When lipoedema sufferers want treatment, they need the time, money, and transportation to seek out the right doctors. This is no easy task. Insurance companies routinely ignore lipoedema, denying necessary treatments every day.
I’m an almost 40-year-old woman who’s been struggling with the emotional and extreme physical pain of lipoedema for over 27 years before receiving proper medical care.
It’s still a struggle to be taken seriously, but thanks to surgery, I’m at least on the right path.
It took removing 25 litres of diseased fat to start really living. Not just for me, but to be the mother my little girl deserves.
Lipoedema and lipo-lymphedema affect every minute of my life, so my daughter knows a lot about my condition. School’s out for summer, so she attends lymphedema therapy with me three times a week. The heat makes my swelling worse, so I still can’t spend as much time outdoors as other parents.
My daughter and I were planning a trip to Disney World in 2020 before I understood how far my condition had progressed. It quickly became obvious to me that I wouldn’t be able to walk that much, and then the pandemic happened.
Sophie understands that now that I’ve had some surgeries – and even though I can walk further today than I could two years ago – all of our money has been going to my medical treatments.
The only thing I keep from my daughter are my really ugly or frightened feelings that are just too much for a child to bear. I try to be age-appropriate with my openness.
I have a long way to go with lipo-lymphedema therapies.
I still have to get skin removal surgeries, keep up with my lymphedema therapy in the clinic plus the 24/7 compression, and then all of the daily stuff: Lympha Press, dry brushing, exercise, a thoughtful eating plan, deep breathing exercises, elevation of my legs, and stress management.
I’ll also need surgery to help repair my lymphatic function in my calves to improve blood flow because I truly can’t see living the rest of my life like this. It’s too much and I need some greater relief.
In other words, I’m still fighting the effects of living with untreated lipoedema for decades even after undergoing surgery.
This has impacted every facet of my life and dictated my capacity to work, parent and experience life in my own body.
My only hope is that my story might prevent other women from a missed diagnosis, so they can get the lipoedema treatment they need before it’s too late.
As told to Rose Butcher.
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