This would really make my life so much easier. But, that isn’t a very realistic option. So instead, I meet onlookers’ eyes once they’ve had a chance to fully (and rudely) stare at my legs for a while, and simply smile.
Our world has a cruel way of making people who look different feel really small. I’ve been on a mission to change that. Talking openly about my lymphedema, my experience and my journey to loving my body is how I have found my voice.
What the heck even is lymphedema?
The short answer is that it is the result of a damaged lymphatic system. This causes extreme swelling, pain and can lead to many complications if not managed properly.
Primary lymphedema is often hereditary or shows up before puberty. Secondary lymphedema occurs from damage to the lymphatic system that happens often from surgery or injury. You see secondary lymphedema in breast cancer patients, typically in one arm as a result of radiation.
There is no cure for lymphedema.
I have primary lymphedema and was diagnosed at age 3. My mom took me to the doctor after frequent complaints that my feet hurt and seeing that it was difficult for me to walk down the stairs in the morning. My doctors believe I was born without some of my lymph nodes.
Sounds fun, right? Growing up as one of the only plus-size girls in my grade had its own challenges. Being the only person I knew with lymphedema made me feel completely alone. Although my mom did all she could to help me feel normal, sometimes I wonder if telling me it was OK to be different might have made all the difference.
My life with lymphedema.
For most of my youth, I hated the idea of showing my legs. What I hated even more was the thought of wearing the bulky, hot compression socks that were prescribed to me. Unfortunately, compression garments were the only way to manage my lymphedema that I knew of at that time.
My small town doctor would scare me into wearing them by showing me photos of infected legs and feet, threatening amputation if I were to let my lymphedema go unmanaged: not exactly what you would want from your primary care physician.
Unfortunately, my luck with health care and doctors hasn’t gotten much better since then. I’ve yet to find a doctor who knows a reasonable amount about lymphedema and have often had to educate doctors myself. This is not to say the specialists aren’t out there, but they have yet to be covered by any insurance I’ve ever had and paying out of pocket isn’t always an option.
Managing my lymphedema involves a few different things.
Compression socks, yes, but also being active (low impact exercise), elevating my feet and legs when possible, keeping them cool and sticking to foods that do not add to my inflammation.
Sometimes it is exhausting trying to keep my head held high when all I’m met with are strange looks, ignorant comments online and hateful people telling me to just lose weight when that really has nothing to do with it at all! But, I made a commitment to myself that I would not let lymphedema or my size define me and intend to follow through.
So, I try to live my life in my own truth, not by trying to fit into any norm or set of predetermined rules for this condition or my body. Hopefully, that is something we can all strive for.
Signing off until next time!
XO, Carmen Rene
(And remember, you can find more of me @eatthecaketoo, or you can email me at: Carmenrene@Curvicality.com)