Understanding Lipedema

Have you had your concerns about your heavy legs and your symptoms dismissed and been told to restrict calories and exercise more? You are not alone. Thousands of women around the world suffer form this horrible condition. I am writing this article as I suffer from Lipedema myself. I am part of the crew Queen sings about in “Fat Bottomed Girls”. June is Lipedema awareness month, yet this condition is often overlooked and misdiagnosed as “simply being fat and needing to lose weight” by many medical professionals.

Agreed that, losing weight will help improve some of the symptoms of the condition but it will not take it away and by no means cure it. I have been on diets all my live. Made to feel that my “pear-shaped” body form and heavy legs are my fault. That I look this way because of a lack of dicipline and determination. I have heard the words “Just do more exercise” one to many times. All of this lead to a lifetime of Yo-Yo diets , feelings of guilt, shame and embarrasment. Unfortunately, the moments of embarrassment are continuous.

The quest to find clothes that fit is endless and the thought of shopping for pants is mortifying. Normal excursions like swimming with my kids or being on the beach becomes a thought that nightmares are made of, as these situations puts the spotlight on everything I am trying so hard to hide. I feel as going as far to say that Lipedema is debilitating.

My Lipedema Story

Being an overweight youngster everything spiraled out of control by the time puberty hit at the age of 14. It was literally as if the bottom half of my body exploded. In addition to my huge body, huge angry red lines appeared, yes, to my horror I discovered the stretchmarks. The complete nightmare of every teenage girl. Hormones were raging and ‘meltdowns’ were plenty. I managed to hide some stretchmarks under my clothes but the ones by my knees were just horrible. The constant teasing of my peers and yes, my family only added to my emotional anquish. I used to hide my pain well by being the class clown. To my absolute disgrace my mom got a phone call from school, during which she was politely informed by my PE teacher that they are very concerned about my weight and that we – my mom – should make a drastic plan. So off we went to a dietition. I was placed on a very strict diet. I managed well but unfortunately  had no remarkable change in my body shape for well over a year. Apart from this my hair started falling out and my skin became very dry. In addition to my battle with Lipedema I was diagnosed with an underactive thyroid at the age of 18. It bit too late I would say.

During my studies at a well-known beauty college in South Africa, I was called into the principle’s office one day. Yet again I was reprimanded about my appearance. The words still ring through my ears. “Miss Strauss, you know the ethos of this school is – You have to look the part, to act the part, to be the part – we suggest that you please look at your weight and do something about it if you want to have a successful career in the beauty industry.”

Later that year one of our lecturers stated the following as we were discussing obesity – “Yes girls, we all know about obesity, we have a friend who is obese and we all love her very much” as she was saying the words, I remember that it slowing yet painfully dawned on me that she was referring to me. I got up abruptly, not like me at all,  and said to her – “It is called Hypothyroidism, you should know the term well”. With that I left the class and went off crying in the bathroom. What I did not know is that all my friends packed their bags and left her class, in protest to what she had done. I appreciated this very much, but yet again my body was the topic of discussion, for how long I honestly cannot remember.

Later on that year as we were busy taking class pictures the photographer, to the absolute horror of the principal, put me in the front row as I was one of the shortest girls in the class. As he was about to say “CHEESE” she jumped forward and moved me to the back row, way at the end. Looking back at it now, I can only smile at her ignorance.

I can tell you many stories about all the hurtful situations I have been in. But this is not about my pain. If you are reading this, you too have a story and are seeking a solution for a similar problem. Your main focus should be your health. Find a support group that understands what you are dealing with and how to cope. I am afraid not. Eventhough losing weight will affect the size of your legs or the affected area, it will not cure your Lipedema. Weight, obesity and Lipedema is linked and if you are prediposed to having issues with the adipose tissue in your body, it does not matter which one of the two came first. You either were overweight, which resulted in Lipedema or the existing Lipedema results in deformation and an increase in adipose cells in the body. I have had my own weight loss success story. Some of you may remember. I lost 43kg’s in 6 months. Amazingly I was still wearing wideleg pants. I had just gone from a size 20 to a size 12. Eventhough I felt amazing and weighed only 65kg’s I was still deemed overweight. I remember having a conversation with a friend of mine one day. We were having coffee and very excited about a new clothing store that has just opened in South Africa. During the discussion she said the following “and I see they have a whole range of plus sized clothing”. An innocent remark that cut to the core of my being. Remember, it does not matter what other people say and all though their words can hurt you, you must remember that you are beautiful.