Living with lipoedema at university

Credit: Cleveland Clinic

Anonymous
Writer

Content Warning: This article contains discussion of eating disorders and restrictive behaviours.

My unhealthy relationship with eating started when I was six years old after a girl on my bus pinched my stomach and asked why it folded when I sat down. Later that year I went over to a friend’s house to play dress-up and none of her clothes fit me. She complained that her “pretty friends” could wear them and that maybe I should “try not to be fat.”

Those two events didn’t cause my eating disorder later in life, but they made me notice my body for the first time. As I grew older and other people started noticing it as well, I became anxious. I was the first girl in my grade to start wearing a bra, and boys would snap the straps and call me names. Men would catcall me when I walked to the store with my friends to buy candy. With every new person who pointed out how I looked, the bigger and uglier I felt.

I spent 11 years of my life fighting crash diets, self-loathing, and over-exercising. Even though I was a perfectly healthy weight – and in some cases underweight – it didn’t matter. I could have wasted away to bones and still thought my skeletal hips were too wide. Looking back, I had developed atypical anorexia, which is when someone performs restrictive behaviours and has an unnatural fear of weight gain but does not meet the low weight criteria seen in anorexia nervosa.

At my lowest point I was eating no more than 300 calories a day, usually comprised of coffee and a single ready meal in the afternoon to power through class. When I was 16, I passed out, hit my head on a table, and had a seizure. My concussion was so severe I developed amnesia over the next four months. Since I couldn’t be at school, I spent most of my time bedridden. I began to gain weight for the first time in years, which gave me the choice to either starve it away or form healthy eating habits. I chose the latter, and by the time I was 17 I had finally overcome my atypical anorexia.

When I entered university, I had the tools I needed to prepare healthy meals, but also the wide-eyed excitement of a first year who wanted to party and go out on dates. I slowly started gaining weight, this time from drinking and late-night snacking. When I had gained almost a stone and a half, I knew I needed to get back in shape. This time I did it right. I started meal prepping fruits and veggies. I took a kickboxing class three times a week. I cut out dairy and limited carbs – especially beer.

When I stepped on the scale after the summer was over, I had lost the weight… yet still couldn’t fit in my clothes. In fact, I had gone up four pant sizes. Though I continued to eat healthily over the next three years, my size continued to grow. Not only could I not find the energy to exercise, but it physically hurt just to stand longer than 10 minutes. I would wake up with bruises all over my calves. As my legs continued to fatten, my waist stayed the same size. My friends started asking me what my “secret” was to getting a larger butt, but I hadn’t done a squat in years.

I was resigned to the fact that maybe I was shaped differently than most people. I felt I needed to so I would avoid negative thoughts about eating. However, by the end of university I didn’t feel like my larger legs were due to genetics. I couldn’t fit in boots anymore. The longest I could walk was five minutes before my calves would cramp. Exercise was impossible because of the pain, but the pain got worse when I sat still. I was so embarrassed by how large my legs got that I hid under maxi dresses and baggy jeans just as I had done as a teenager – only this time I really was overweight.

Overwhelmed, I finally went to the doctor who recommended me to a vein specialist. As soon as I walked in the room, she looked at my lower body and said: “You obviously have lipoedema.”

It was a blessing and a curse to hear. The weight gain was not my fault, but it also had no cure.

Lipoedema is a rare genetic disorder where an abnormal build-up of fat begins to grow in the thighs, buttocks, and lower legs. The affected areas become extremely tender, bruise easily, do not grow hair, and become heavy despite diet and exercise. It is a progressing disease with three stages, and once you reach a certain stage it cannot be reverted without surgical intervention. You cannot lose “lippy fat” as my doctor called it. You can get expensive specialised liposuction, but I did not qualify because of an undiagnosed vein disorder that would require seven surgeries to correct.

Additionally, lipoedema usually develops when women hit menopause. My doctor told me I was bound to inherit the disease, but the fact that it began when I was 18 and not 55 astounded her. Lucky me.

I mentioned my eating disorder earlier because I find my circumstance ironic. Lipoedema is often called “the fat disease” online because people with it are usually obese through no fault of their own, and it’s often misdiagnosed as obesity. I had spent so many years hating my proportionate body, and now I am forced to love my larger one.

I write this anonymously to encourage any women out there who have been gaining weight in their lower body to seek a specialist like I have. You may think it’s hormones or unlucky genetics, but it could be lipoedema.

There is a silver lining. Even though my legs are becoming lumpy, I wear compression socks under my clothes to reduce the swelling. I can now walk 20 minutes without needing to rest, even as I navigate the hellish Glasgow hills.

I haven’t gotten the courage to tell people about my disability, but I have gained the wisdom to not blame myself. When I complain about being winded on a night out and my friends recommend taking me to the gym or joke that they’re out of shape too, I don’t revert back to my restrictive eating.

Lipoedema is the lesson I’ve learned after a long battle of eating disorders. It’s the reason I’m forced to look in the mirror every day with my small waist and large legs and tell myself I am loved. It’s forced me to realise there is more to life than being skinny, given I physically never will be again. And if this story helps just one woman realise she has it too, I’m glad to share it with the world.

It is hard being a young woman with a disability that causes me to gain weight, especially in a society that pressures my exact demographic to be small. But I promise anyone reading with lipoedema that the only way to fight that voice that tells you you’re not good enough is to realise the only voice that matters is your own.