Explaining Lymphedema to Friends, Family and Strangers

It can happen at any time: You might be grocery shopping, minding your own business, trying to figure out which type of salad would go best with the pasta for dinner, when all of a sudden, a stranger appears from stage right, points to your compression garment, and asks, “What happened to your leg?”

If this sounds familiar to you, you’re certainly not alone. Unsolicited questions and comments are, for better or worse, all too common when living with lymphedema. The general lack of awareness of the condition, even within the medical community, combined with people’s natural curiosity means that you may find yourself on a Friday evening giving a lesson on lymphedema to someone in aisle 10 of your local grocery store. Or not.

And that’s the important point here: how you respond to such questions, if at all, is entirely up to you. While some days you may appreciate someone’s comments or questions about your compression garment, for example, they may trigger negative emotions at other times. Or, you might just not want to volunteer information about your personal medical history. All of these responses and feelings (and more!) are valid and perfectly okay to have.

Things to remember when asked about your lymphedema

Still, questions are bound to come up, and being prepared for them may help make navigating these situations a bit easier.

Just keep in mind:

  • You are not obligated to discuss your personal medical history with anyone.
  • You decide how in-depth to make your answer, if you decide to respond at all.
  • Every person’s lymphedema and lymphedema journey is different.
  • You do not need to be a walking lymphedema encyclopedia. There are plenty of resources available online that you can refer someone to if they are interested in learning more.
  • At the same time, being a lymphedema ambassador and raising awareness of lymphedema can be fun and empowering, so if you’re feeling up to it, don’t be shy!

Some ways to respond to questions about your lymphedema

With that said, certain situations in life, like starting a new job or entering a new grade in school, may make you feel like your lymphedema is taking center stage. For times when you’re meeting new people and for times when you’re caught off-guard, having some default answers can help. These can range from “I have a chronic condition called lymphedema” to a full-on lesson about your lymphatic system, the role lymphedema plays in your life and how compression garments help you manage it. Some organizations, like the Lymphedema Advocacy Group, have even made handy information cards, flyers and posters that you can pass out in times like these!

And of course, you are perfectly entitled to set boundaries – when it comes to your lymphedema or any other part of your life, for that matter! It’s okay to let someone know that your health is a private subject that you’d rather not discuss with strangers.

When you’re caught off-guard or simply not in the mood to talk, another option is to let the person know that you’ll get back to them with an answer later. Also feel free to revisit or add to your response at a later time. This can help to start a conversation about lymphedema on your terms. Plus, it’ll give you a chance to refer them to some of the great resources available. Send them a link to LymphCare’s explanatory video on lymphedema. Do you have a favorite lymphedema blog, book or podcast? Let them know about it! Are there lymphedema awareness events taking place in your community? Invite them to join!

However you decide to respond, know that you’re perfectly right in doing so. Your lymphedema is yours and you’re the one who gets to decide how to talk about it.

What are your go-to methods for responding to questions about your lymphedema? Let us know in the LymphCare forum!