I will not let Lipoedema define me

I spent a good half of my life trying to work out what was wrong with me. I have always been slender, but as my brothers often reminded me, with odd shaped knees and arms. I had a fascination with other girls legs. I would see robust girls carrying much more weight with these beautiful strong toned legs. They had a defined knee and calf muscle. I really couldn't understand why my legs looked the way they did, covered in cellulite and no definition. I ate a pretty balanced diet. I must admit that in my early twenties, processed foods, lollies and soft drink were a weekly occurrence but not daily. I exercised most days and tried many FAD diets. I was always able to lose a couple of kilos that I had gained (which I thought was from my young adult lifestyle.) But, no matter what I did, my knees were always covered with a layer of fat, my arms were always soft to touch and my triceps were never toned. I found out when I was 27, after coming off the pill, that I had PCOS (polycystic ovarian syndrome) and so the adventure began with wanting to heal my body with food. It was not going to be for another 6 years that I found out that I had Lipoedema.

Lipoedema, also known as Lipedema, effects 11% of the population worldwide. Lipids are fats and edema is swelling.  Lipoedema is a disease characterized by swelling of superficial fatty tissues. The Lipoedema fat cannot be burned off through diet or exercise. There is no cure and, at the moment, the only way to remove this fat is through a specialised lymph sparring liposuction. Lipoedema is a condition that mainly affects women and is characterised by a painful swelling in the legs, thighs and buttocks and sometimes the arms. If you have lipoedema your legs or arms become swollen, bruise easily, are tender and feel painful and uncomfortable. Lipoedema may be found in women of all shapes and sizes. 

"There is damage to blood vessels and they leak their contents into fat. This is why you bruise easily – your blood vessels, at least in your fat and skin are not normal.  Something is wrong we just don’t know what!. " Dr Herbst

I was in a practitioners facebook group while researching cellulite, wondering if any other praccies had found a magic formula. I came across: 'make sure you rule out Lipoedema'. I took a screenshot and put it in the back of my memory.

Fast forward to November 2019 and my reality felt like it came crashing down. The word Lipoedema came up again and I immediately recognised the word but decided to actually investigate what it was. I couldn't believe what I was seeing. I must admit I did not look like most of the women that were on the screen in front of me, but I knew with all my heart that is what I had. I called my sister and brother straight away. They both thought it made sense. My sister, who is a counsellor, was supportive in confirming that I may be correct but also made me feel there is a chance that it is not definite. My bothers response? "You 100 percent have that."

I found a local MLD therapist who specialised in Lipoedema and made an appointment. I thought to myself, I am not going to mention anything about lipoedema. I am only going to say that I need help with my arm as I had broken it a few months ago and it was still swollen.

She confirmed what I felt like I had known since I was a teenager. There was relief but also a deep sadness. I finally had a diagnosis, a label to what was wrong with me, sounds great except that there is no cure. I was at a loss, I had been trying to heal my body from something that I had no name for to find out that I cannot fix the very one thing that has caused me pain, grief, isolation and made me holdback from life.

I immediately wanted to have surgery. My husband, who has always been very supportive, was not 100% convinced and neither were my best friends. It made me feel so alone. My husband wanted a formal diagnosis. Something in writing, surely a massage therapist can't diagnose such a condition? I spent many moments over the next month in tears. I finally went to a vascular surgeon but I felt like I was going just for everyone else, like I had to prove to them that I had it.

The shame of already calling myself a holistic Nutritionist, who had bingo wings and fat knees, made me feel like a fraud; like no-one would want my advice if they thought I was fat. Then for my friends to not believe me made me feel terribly alone. The day of my appointment they made me undress and get in a gown. The assistant had forgotten to take photos and the doctor said "oh quickly just take them while I set up." I took my gown off, he looked over and said. "Could you please turn around and hold up your arms. You have lipoedema all the way from your wrist to your shoulder."  A little voice in my head responded 'You don't say!'

The one thing I have gained from finding out that I have Lipoedema is a sense of community. No-one understands the shame, the fear, the pain and the self criticism that we face daily with this disease. We need to come together and support each other and share our knowledge. Because without a cure we are our own advocates for prevention and healing.

Aimee xxx