I only vaguely remember the time when I did not have lymphedema. I remember being a carefree and active kid at 7 or 8 but sometime after that I started to notice a change. My lower left leg was starting to swell. I was diagnosed with lymphedema around the age of 8. I don’t know what caused it. Doctors don’t know what caused it. I was not born with it. I do know that is around the time that my outlook on life started changing. As a child, I could not grasp why this was happening to me. In the beginning, my parents took me to all kinds of specialists to try to get some answers. My hopes were SO high. Doctors are supposed to make you better, right? After years of going to doctors with no resolution, my hopes started to fade.
I had to slowly come to terms with the fact that this is something that I would have to live with for the duration of my life. I would have to use the lymphatic pump and wear these hot compression stockings for the rest of my life. I did wear the stockings for a while. But the teasing from classmates caused me to try to go unnoticed. So I gradually stopped wearing skirts and dresses that came above my ankles and started only wearing pants. I was too young to know that what they said about me did not matter. I went on to later play volleyball and softball in high school. I’m 33 now and sometimes I still find myself trying to hide my leg when I’m not around family and close friends.
Living with lymphedema is hard. It’s embarrassing to have all of the stares and the questions. It’s uncomfortable to have to wear compression stockings day in and day out. This is not something that you can take a break from. It is with you every single day. Even though I tried to go unnoticed, I had family and friends who were so very supportive of me then and even now.
If given the choice, I wouldn’t have chosen lymphedema. Who would? But it is something that I have to live with. It has helped to shape me into the person that I am.
I would tell anyone: don’t allow lymphedema to limit your life. It doesn’t have to be the end. Challenge yourself. It helps to have the support and encouragement of family and friends but even if you don’t, encourage yourself and know that you are not in the fight alone.
