Tips & Tricks

Excuses, excuses

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!

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!

6 comments on “Excuses, excuses

    I remember when you used to go to great lengths to hide your lymphedema. Now you practically offer it up before people even ask you anything :)
    You are the picture of courage and inspiration to many others now. All your past fears and struggles were not in vain because now you’re able to help others learn how to gain that same strength and confidence in themselves! YOU ARE AWSOME!!!

  2. First I tell them that I have lymphedema. Then they ask what it is. I explain to them what the lymphatic system is/does and that mine isn’t working properly. “Oh that’s too bad…Does it hurt?” How do I answer this, the NUMBER ONE QUESTION I get??? How do you quantify psychological pain? Would it make it more or less important if it did hurt 24/7? Do I tell them that no, most of the time it doesn’t hurt but sometimes I can’t sleep at night because my boot is too tight or I can’t walk because my shoe has a vice-like grip on my swollen foot? Do I tell them that some nights I just sit on my bed and cry about my grotesque leg (I’m not much given to pity parties, but hey, it happens to the best of us)? I just breathe for a second. Then respond patiently with “It doesn’t hurt most of the time, but it’s uncomfortable all of the time” and leave it at that.

    • This is so heartbreakingly true. I teared up reading this because it’s chilling when somebody out there really feels the same way. We all feel the same way, I think. The lymphedema community (especially the young adults) are so disjointed and spread out that when you come across comments like this, it shocks you a little bit, because you’re not used to actually agreeing to what somebody says rather than explaining or defending yourself.

      I like your final sentence, I think that’s the perfect thing to say when people ask if it hurts. Because you’re right – it’s ALWAYS uncomfortable. I’m going to write a post about body image soon, because you’re raising a lot of good issues (as always!!). Take care, Aria!

  3. Jim Miller

    Oh my. You ladies are terrific and I hope you realize how excellent it is to have a forum like this – open and honest.
    When my girls were little (they’re 28 and 19 right now) and their friends would come over, little kids don’t hesitate to ask, “What’s wrong with your leg?” Or they’d ask, “What’s that you’re wearing on your leg?”
    Like all of you, at first I stumbled over the answer. Then just said to the little kids, “It’s sick and gets fat” or “It’s my owie” or, as the new friends got older I’d say about what you’re telling people. But when the little kids used to ask what I’m wearing, I used to give the elastic a snap and say, “This is my panty hose”. They’d giggle and keep on playing.

    • Hi, Jim! I’m glad you’ve found the site and have been commenting.

      I think it’s great that you bring humor to it. I know they were little children but still – people seem to get their cues on how to act based upon how YOU regard your condition. If you’re embarrassed or insecure about it, then they won’t be able to ignore it, either. Consequently, if you treat it like it isn’t a huge deal, then they won’t, either! So, really, it’s up to us to make peace with it and feel confident about it, and then the rest will follow.

  4. Pingback: Shamed by Facebook: How One Woman’s “Undesirable” Photo Turned Outrage into Empowerment – The Lymphie Life

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