For years I’ve been hiding my legs… I live in one of the hottest states in the U.S. and yet I never wear shorts in public and I do so only at home among family and close friends. I have been aware my legs are different since I was in high school and I always assumed it was just something I had to live with.
When I was laid off this January, my brother asked “So you’re finally going to go for disability right?” I didn’t know how to respond—sure, my legs are huge but I never had a condition to label them with the exception of being told I was fat—Duh!!!!! I discussed it with Joel and other close family and friends and I decided to see another doctor and hopefully get some answers this time—I am thankful I did—I was finally diagnosed with Primary Lymphedema. All those years of not knowing, all those years that I could have been taking measures of preventative care, all those years of depression and thinking I was responsible for the way my legs looked.
So a new path has presented itself, a path that I need to become informed on, a path that I could possibly choose my actions and reactions and most of all, I path I could explain to my friends and family and not feel so isolated—don’t misunderstand me, I am not going to become the poster spokesman for Primary Lymphedema, but I am also not going to let it control my life, I am going to fight back and while there is no cure, I can take steps to hopefully prevent it from getting worse—those include diet, exercise, therapy and more research on my behalf to see what may or may not work for me. One crucial aspect of my condition is that I need to keep my legs elevated as much as possible because the longer I’m in a seated position, the worse my legs react at the end of the day and they can become heavy and miserable.
I wanted to discuss this for awhile, but I have been coming to terms with it and it can be a rough pill to swallow. I will hopefully be going on disability soon so I can work on this and take proactive measures—if I don’t, there may be a chance that I could end up in a wheel chair down the line and I don’t want that. I have been discussing the aspects with close friends and my family and I am so very lucky to have such a great support group. I have been making choices now that I hope will benefit me down the line and I have been learning about myself and how I cope with adversity.
I am not asking for pity, I am asking for understanding. I am asking when you see someone with large extremities that you not just think they’re fat—that you consider other aspects. I have had employers that made comments about my legs—comments that stung and made me more self-conscious about my legs, now, I have an answer. I tried diuretics and with my condition, they do nothing, now, I have some paths that will hopefully lead to answers. Wish me well.