Today I got an email from a fantastic reader (hi, Aria!) who asked me a lot of questions. They were really good ones, ones that will definitely serve as prompts for future posts. One of her questions that I wanted to address was about how to explain lymphedema to your friends. It’s a big issue that I think a lot of lymphies – especially the kids, teens, and young adults – grapple with a lot.

What do you tell people? How do you tell them – and when?? There are so many paranoid things that run through your mind, like if they’ll think of you differently or (oh, lord) even be slightly weirded out by it. Will they look at you funny? Tease you? Avoid you? Or will nothing happen at all?

There have been tons of instances where a friend will notice my leg and ask if I’ve sprained it or something because “it looks swollen.” On a few occasions, strangers have even said something to me about it! I used to get so flustered that I’d completely babble, going into detail about my disease until the person would feel uncomfortable and awkwardly nod along as I rambled. After years of this, I’ve finally developed a stock response. I highly recommend having your own stock answer to whip out when people ask you about your lymphedema, because it keeps things simple and will make you feel much more relaxed.

For me, the easiest thing to say is that I have a medical condition that causes chronic swelling in one of my legs. Short, sweet, and to the point. If they want to know more about it, then offer to answer their questions. It’s great to spread awareness and understanding of this little-known condition! And if they don’t pursue the issue any further, then hey – you can move on, too! There’s no reason for your medical condition to affect your friendships. If they are true friends of yours, then they will accept you – screwed up lymphatics and all!

A cathartic thing that I did was organizing a presentation at my high school about lymphedema a few years ago. I stood in front of the entire student body and talked about lymphedema, and showed them a video (found here) that explained it in more medical terms. I didn’t come out and say that I had lymphedema, but it was so rewarding to spread awareness and see how it touched people. On top of that, I collected almost $500 in donations for the Lymphatic Research Foundation! It was definitely a good feeling to see people so eager to help out – all it takes is a little understanding.

What about you? How do YOU respond when people ask you about your lymphedema? Do you avoid it, or are you comfortable explaining it? Leave a comment!