Getting Personal

Hey, all. Living with this disease has not been easy. Growing up, I always knew one of my legs was bigger than the other – we just didn’t have a name for it yet. I wasn’t diagnosed until my sophomore or junior year of high school, when one of my mother’s friends came over. She was a plastic surgeon who was going to look at my leg to see if I could get reconstructive surgery. As soon as she saw it, however, she said surgery wouldn’t help, because it seemed that I had lymphedema. My pediatrician never recognized it as lymphedema and was actually surprised when I proposed it. She had no real idea of what to do about it.

I was teased because of my condition. In middle school, girls told me I had a “cankle,” and that it meant that I was fat. In high school, people would sometimes point it out and ask questions or make fun, and it killed my self esteem. I became obsessive, checking how my leg looked in the mirror the way most teenage girls will check out their butt or stomach. I felt ugly and worthless. I would often break down in tears before school or before going out at night, because I thought I looked terrible and my right leg was huge compared to my left one. I felt I was unlovable and undesirable, simply disgusting. I developed an eating disorder in hopes that, if I lost weight, the ankle would lose weight, too. Obviously, this didn’t work, but that’s a whole ‘nother story..

I was really resentful of myself for a long time, feeling especially hopeless because there’s no real cure and it actually gets worse over time. I saw those people on Discovery Health with elephantitis, and I would become so afraid. I didn’t want to become that – I still don’t! However, I’ve educated myself about it and how to take care of my lymphedema so that it doesn’t become out of control. I know a lot more now than I did in the beginning, and that’s made so much of a difference in the way that I see myself.

I’m told that I’m lucky because my lymphedema is pretty mild compared to that of others. “I barely notice it,” people have said, “I wouldn’t have seen it unless you pointed it out.” No matter how many times people have said these things, though, it can never take away the underlying frustration and loneliness. One of the worst things of having lymphedema, is feeling that there is no one my age to talk to about it.

So this blog is my efforts to reach out to people – of all ages! – to share their experiences or even just feel a little less lonely with their disease. I am so much more than my disease, and you are, too.

xxo Alexa

Alexa is a writer, book hoarder, and cat enthusiast from Baltimore, MD. By day, she works in the marketing and communications department for a large health system; by night, she runs The Lymphie Life. Learn more about her here!

3 comments on “Getting Personal

  1. I know exactly what you mean as a High school student with Lymphedema (primary, left leg) my leg is approx. 1 1/2 times bigger than my right (more than it sounds). I have all the same feelings as you, and when I was 12 I tried to commit suicide. It’s good to see other young people with it, and believe me, you’re much prettier than me.

    • Hey,
      I’m sorry to hear that you’re struggling, but I’m so happy that you chose life instead of suicide. I give you a lot of credit, because I understand how hopeless things can feel. It’s difficult and alienating to be this age and have what feels like a physical deformity, but you need to realize your priorities in life – like, what’s more important: wishing you could wear those adorable little shoes, OR maintaining your health and well-being? It’s hard, I know.. There have been times where all I’ve wanted is to wear skirts and cute shoes without feeling ashamed or embarrassed, as shallow as that sounds. But hey, sometimes we just need to make peace with the way our bodies are and learn to keep it healthy, rather than hurt it.

      I’m sorry – I feel like I’m rambling. But! My point of all this is, unfortunately we cannot help the bodies that we are given, but we CAN take care of it and keep it in the best health it can be. As I’m sure you already know, there are things you can do to sort of camouflage or disguise your condition, to make it a little more discrete. I’m going to write a post soon about “dressing for lymphedema” (ways to make it less noticeable and therefore making you feel a little more confident) so keep an eye out for that, too.

      Remember: you are never, never alone! <3

  2. Pingback: Lucky 7: Celebrating the seven year blogiversary of The Lymphie Life – The Lymphie Life

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