What happened to your leg? • What are you wearing on your arm? • What’s all that bandaging for? • “Lymphedema” — what’s that mean?
Do any of these questions sound familiar? Chances are good that if you have lymphedema, you’ve been asked questions like this at one point or another — maybe even on a near-daily basis.
The thing is, humans are naturally curious: we see something or someone that’s a little different from us and we want to know what, why, and how. We ask questions. Being on the receiving end of those questions can be difficult, though, especially when it’s about your health.
I used to dread questions about my lymphedema: I was so self-conscious about my swelling that any questions or comments automatically felt invasive and uncomfortable — I didn’t want to draw any attention to my leg, let alone talk about it.
Over time I realized that if people ask questions it’s usually because they genuinely want to learn, so I made the choice to approach questions about my leg not as personal intrusions, but as opportunities to spread awareness about lymphedema.
Whether I’m making small talk with an Uber driver about my blog or receiving a double-take from a neighbor in the elevator who’s just noticed my compression garment, I’m constantly flipping through my mental Rolodex of responses to determine how to best explain lymphedema to strangers.
I like to call this “lymphsplaining” because I’m not only explaining lymphedema and the lymphatic system, but I’m doing so within the context of my own personal experience as someone who lives it. This distinction is significant: there is so little awareness in mainstream society about lymphedema and the lymphatic system that the responsibility to educate often falls on us, the patients and advocates.
We lymphies are ambassadors to lymphatic health and may find ourselves lymphsplaining a lot, be it to strangers, friends and family — sometimes even to medical practitioners! It’s not a bad thing, but figuring out how to respond to questions can be a little overwhelming at times.
My go-to responses
How you respond to questions about your lymphedema is dependent on a number of factors, the most important being you. What are you comfortable with? How much are you willing to share? What’s most appropriate for the situation?
For me, I’ve found that I default to one of three types of responses: a brief explanation; a full-on mini lesson on the lymphatic system; or a polite but firm boundary. To better explain what each of those mean, I put together this little illustrated guide for you. (Excuse my sloppy doodles!)
1. The Briefing
Sometimes, less is more! A brief explanation can be all you need to get the general idea across while still teaching the other person something new. If they want to know more they might follow up with another question, but usually a short ‘n sweet answer is satisfying enough.
2. The Physiology Lesson
Most people have no idea what the lymphatic system does, or that it even exists. If you know your stuff, by all means — drop some knowledge! Don’t be afraid to pull out some visuals or use a creative analogy to help you lymphsplain, either. A thorough and well-informed response is one small step for helping their personal understanding, but one giant leap for lymphedema awareness.
3. The Polite Boundary Setting
Last but not least: if you’re not comfortable answering questions about your lymphedema, say so! There’s absolutely nothing wrong with setting a boundary. Let whomever asked know that your health is a personal matter, although you’d be happy to send along some resources where they can learn more about lymphedema if they so choose (like The Lymphie Life, for example! 😉).
That was excellent! I’ve been lymphsplaining for over 32 years and in one illustrated guide Alexa nailed it! Well done!
Sent from my iPhone
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Thank you, Barbara!! I had a lot of fun with this post, so I’m really glad you enjoyed it!! 😊
I am on the Lymphedema Advocacy Group Board for The Lymphedema Treatment Act. I often give them my LTA business card where there is a lymphsplaining all about Lymphedema!
I love that response, Rebecca! LTA is a great resource — thank you for all you do with both LAG and the LTA!
I’ve been explaining about it for as long as I can remember.. I’m 67 yrs old . I was born with it.. So was my Dad.. My daughter..my sister..brother..nephew.. His 2 daughters.. & my niece & her 1 son. My dad was the only one of 14 that had it. I went through school being teased about it. I have it in both legs.. Right ankle & left leg
Ha! Cute! Love the visuals :)
Thanks, Sarah! 😊 xx
I love it – I have had lymphedema for over 30 years and most of the time I just get rude stares or someone pointing out to me that my feet are very swollen – in my head I am like oh wow thanks for pointing it out as I had no clue.
Woow — I’m convinced that some people just do not think before they stare or make comments about our swelling! Living a couple decades with lymphedema teaches us that real quick 😅 Wishing you all the best, Veronica!
I have had some crude comments when people notice the garments. I respond to those kind of comments by saying. You k nw when you have surgery and there a list of what could go wrong, this is one on them. Leaves them speechless. Others do show true concern……….15 years of experience here.
That’s a great response: explaining it as a side effect of surgery is brief, but still says a lot. Awesome, Kay – thank you!
What a great article, struck a cord. Love the visuals too. I’ve had it for 32 years , I think my response depends very much on how people ask and what hey say and to an extent what mood I’m in!! Bad leg day usually means I’m not going to explain much. I mostly use it as a chance to educate , I’m a health professional too so it’s a great opportunity to share knowledge xx
I’m so glad this resonated with you, Jane! Thank you for your thoughtful comment. I agree: I think my mood – and their tone when asking – definitely informs my response, too! Wishing you the best xx
Love your graphic explanations.
As mine is arm lymphoedema I tend to say it’s a result of lymph node removal with bc. Or just: It means I no longer need to wear deodorant on that side as toxins not removed which is why need this garment when exercising, travelling more than say an hour or in summer heat of Australia. Also why vigilant to not get bitten by ticks, leeches or mozzies; Not to get overheated either so always wear hat and sunglasses even in winter. Just learn to adapt after all it’s better than …..condition x, ……or having LO from birth/childhood with constant changes as growing, leg Lo…..
Length of explanation dependant on how active the listening and questioning.
Have been known to give university student info re ensuring his age group and parents age group get appropriate Health checks for skin, breast, gynae and Bowel cancers done, need for Papp smears and all vaccinations necessary ….. prevention better than cure, …..early diagnosis better than late. Tell reluctant women brief pain of Papp smear or mammogram far better than surgery etc,
Or may say Lo side effect of surgery and radiation treatment
or even here feel to budding medicos esp when doing medical role playing and what is and isn’t part of today’s role as they learned to examine lymph nodes and check for fever of unknown origin (I supposedly had lymphoma that day)
also may explain means healing from say a flu or infection is much slower due to impaired Lo system. Some people born with this. Always feel other sorts of Lo worse than mine since even more debilitating, disfiguring and hard to diagnose than mine. Sometimes say this too.
So hard to judge sincerity of question sometimes, however always feel a question is an opportunity to “spread the word” re lymphoedema, what it means for others like me, need for better diagnosis and treatment options perhaps even why is it not a Medicare item in its own right? Why do I have to pay for garments myself when others get treatment for cigarette and other addictions on public purse? Why no public treatment options where I lived for 35 years
Your green (in NSW) lymphoedema friend,
Hi, Carol,
Thank you for such a thoughtful response!! I can relate with a lot of what you shared, especially with how many variables there are to inform the way in which we respond, i.e. the asker’s sincerity and tone. It can be hard to gauge sometimes but I think erring on the side of education is always a safe bet! 💙
Thanks again for your comment!
Wishing you all the best,
Alexa
I, so enjoyed the article and the question.
I have had Lymphedema from 23 nodes removed, radiation and chemo. I have had it for 7 years now and bittersweet to hear people have had it for 20-32 years.
My hope is the research with the oral medicine that seems to be proving successful to decrease Lymphedema won’t cost millions of dollars to people can use it without mortgaging their home.
I have also had mixed feelings with questions. One person has asked me three times if this ran in my family or did I have a runner in my stocking.
Since I am a retired nurse and certified chaplain I usually go the route of education. I enjoyed the signs using Eyes and voice to help with understanding of the disease but a bit bulky to carry unless you are doing a lesson on Lymphedema.
I have always wanted my focus to be on other issues rather than my leg but sometimes I need to educate and let go.
✌️😀🍀
Hi, Janet,
I totally relate with what you said about having mixed feelings! Sometimes it’s hard to gauge what’s genuine curiosity and what’s plain ol’ nosiness, but – like you said – erring on the side of education is usually a safe bet. You sound like you’re a wonderful ambassador for lymphedema awareness! 😊💙
Be well,
Alexa
I too love your blog and the term “lymphsplaining”… you are so clever and so smart!
I have had LE for 34 years in my left leg. Initially, I only to wear compression stockings to the knee; eventually had to wear a full leg stocking; sometimes pantyhose.
I am a teacher and my young students, ages 4-8, are the most curious and less inhibited about asking about my leg. Obviously, I can’t give them a technical explanation, so I just tell them I have a disease called lymphedema which makes my leg swell. There is always the empathetic student who feels bad for me. One little girl began stroking my leg during circle time… she wanted to make it feel better. Aww!
Adults, including friends and family, are either afraid to ask or when they do, they don’t understand. I began handing out the information cards from the Lymphedema Treatment Act organization… it has a great graphic of the lymphatic system and explanation of what lymphedema is.
My favorite story is how my dance director and maestro, nicknamed my leg, “La Piernota” (which translated means “big leg”, but he meant it as a term of endearment. I danced in a ballet folklorico dance company for 21 years. Miguel was always concerned and worried and would always ask me, “Y como esta la piernota?” (translation: And how is the leg?)
I recently purchased a turquoise stocking which attracts a lot of attention. Gives me an opportunity to educate and bring awareness to lymphedema!
Julia, I love those anecdotes – especially of your sweet little student! How cute is that! Children are so readily accepting of differences. They may not always ask about them in the most tactful way (haha!) but their questions come from the heart. As for adults… I’ve found I often get the same reactions as you described: they’re afraid to ask, or they find it difficult to understand, even if they try! I get it, though – I have a hard time understanding it myself sometimes. Always learning!
I got a kick out of “La Piernota” – sounds like your leg was nicknamed with genuine love! Your practice of handing out informational cards is great – empowering through education is usually a safe plan of action. And OMG, the turquoise stocking sounds PERFECT for you, especially living in the Southwest!! 🌵💙
Wishing you well!
Alexa
(PS Sorry for the late response – I read the comments when they come in, but sometimes it takes a while to reply!)
I think a shirt should be made up – like this–La Pienota?? I have some lymphsplaining to do Ricky!!😍Lucy— We need more awareness!! Maybe then we would get more assistance with medical needs!! Hugs from another lymphie!!
My cousin sent this to me, thank you. I have known and watched her as she has been living with lymphedema. I am not a Wikipedia of lymphedema, I do understand, and quietly or verbally acknowledge what is happening. I get very excited when something new comes her way to make her life easier. I will tell you I do not know anyone more intense and proactive as she is, and because of this including the ups and downs get her through each day. She makes it look like it’s all up days. I am very proud of her and love her very much. My daughter after breast cancer and surgery is facing mild lymphedema (is there mild lymphedema?) She is also very proactive and I know who she will turn to when she needs to our cousin. So talking and educating works. Help others I know I will
I’m so glad you found this useful in your journey to better understand lymphedema, Karin! Both your cousin and your daughter sound wonderful and like they have a great outlook — they’re lucky to have you as a support, and to have each other, too! Wishing all three of you good health and happiness. 💙
(PS Sorry for the late response – I read the comments when they come in, but sometimes it takes a while to reply!)
This is great! I can do something similar with my skin cancer scar on my face!
Yes!! So glad you found it useful, Kathleen! 💙
Thank you for a multitude of reasons for all this information. I have learned more from IG than my doctors or physical trainers.
I’m glad you enjoyed the post, Linda! I agree — we learn so much from our community. 💙
Wishing you the best!
thanks for this made me realise I’m not alone.My kids call my leg the plastic leg and show it to their friends at School. I just explain I have a poorly leg and they accept it. Kids are way better than Adults
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Primary lymphedema here…35 years experience in lymphsplaining. Onset age 13… Diagnosis age 16. Early on I had no clue how to answer questions.
I remember peers pointing at my leg and calling me “coffee can leg” and, don’t get me started on the term “cankle”!
Over the years I’ve used several methods, including “got bit by a mosquito,” for the ones that were being jerks. To downright detailed when trying to convince doctors that an infection in me needed to be treated vigorously.
I still struggle with pedicurists, almost every time they look at me, look at my leg,. Look at me again, poke my leg and giggle…
Anyhow, most often I just tell them, my lymphatic system sucks, if they ask more I explain.
Thanks for reminding me that I’m not alone. <3
Thank you so much for sharing. My daughter has primary lymphedema and I’m trying to teach her that most people are curious and to be proud of her body she’s 11 and this is going to be a tough road ahead. Her edema is bilateral in her lower extremities and her right arm.
Lymphsplaining! What a great word that captures what all of us have been doing for years! I never refuse a chance to educate and make folks aware of Lymphedema. I too have the three scenarios ready to evaluate and deliver the correct response to questions.
Air travel usually brings questions and an opportunity to go in depth. Have had remarkable inflight conversations!
My only pet peeve, is the person(s) I meet often and have heard the lymphsplanation, all versions, and looks at my compression garment fitted arm and asks “when do you get that off?” or “still wearing that” as they point to my garments. Only response I have for that is “ Lymphedema never goes away. If you see me, I am wearing these garments.”
Thanks for this opportunity to open this conversation Alexa!
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