It’s Tuesday, around 5:30 in the evening.
I’m on the bus and it’s packed: standing room only. Outside it’s pushing 95°F, and my lymphie leg is throbbing underneath my thick thigh-high compression stocking. The garment is pinching behind my knee; I know my skin is going to be welted and red when I get home.
As the bus turns a sharp corner I brace my feet for balance, grimacing in pain. I forgot to change out of my heels before leaving the office, so both feet are hurting. In my mind I’m screaming: “I NEED A SEAT. I NEED A SEAT. PLEASE, SOMEONE GIVE ME A SEAT.”
But outwardly, I stay silent.
I picture what it would be like to ask a fellow passenger for their seat. I imagine huffs of inconvenience, a questioning glance at my leg, maybe a mumbled excuse. The bus is a shuttle offered by my place of employment — a large academic hospital — so most everyone on it is tired and could probably use a seat. Why should they give me one?
I realize I’m projecting a little. I think I’m just frustrated with the strange, undefined space I seem to exist in as someone with “mild” lymphedema. At first glance, I appear able-bodied: even within the lymphedema community I receive comments accusing me of not having “real” lymphedema, telling me that I’ve got nothing to complain about.
It’s as if there’s a constant demand to prove my lymphedema and its effects are valid — to doctors, to my own patient community, to passengers on the bus — when all I want is to sit down.
It’s not until we reach the third stop that I’m finally able to slide into a vacated seat. I lean over and fumble with the straps on my sandals so I can change into my flats; I notice a young woman giving me a sidelong glance.
“Sure,” I think bitterly, as I shove the pair of heels into my bag. “Now you see my leg.”
I lean back in my seat, surprised at myself: Why am I so angry?
Well, let’s see — I’m on a shuttle bus surrounded by medical professionals and students, yet no one seemed to notice the swollen limb in medical-grade compression standing in front of them for the past two miles. And if they did notice, they didn’t think to offer their seat.
I realize I sound entitled. But in almost two years of riding this bus, only once has someone offered me their seat. Even when my leg was wrapped in thick layers of bandages for an entire month, I was left standing.
What’s worse, though: no one offering me a seat, or me not speaking up for myself while I’m in pain? How can I expect others to look out for me when I don’t look out for myself?
I shift in my seat, trying to catch a hint of air through the cracked window. I pull at the compression stocking behind my knee as I run through potential dialogue for the next time I need to sit down.
“Excuse me,” I imagine myself saying. “I have lymphedema and my leg is in pain. Would I be able to have your seat?”
You sweet thing. It takes courage to write this blog. It takes courage to deal with the throbbing leg nobody understands. It all takes tremendous effort. I was born with lymphadema similar to yours in my left leg/foot and right arm and hand. I will remind you that while you may not even be aware of it, I know you are inherently more caring, compassionate and aware than most people as a result of your own infirmity. I applaud your strength.
I would never ask anyone to give up their seat either. I know how you felt though. I have primary lymphoedema in both legs, came on at puberty and not diagnosed until I was 40. A lot of damage already done. I hate that throbbing pain which accompanies the swollen feet and legs. I’m finding more and more difficulty in enjoying a shopping trip with my sister, playing and walking with my grandchildren. As you say it’s invisible – I wear trousers – and often people have no idea the pain we are in.
Here in France we have a heatwave and we our looking forward to visits from our 2 sons and their families – spread over 6 weeks. I know already my feet and legs will be a big problem for me. I want to do what everyone else does.
I also am overweight and trying to eat sensibly to shed some kilos. I also have a desk job….
I’m going off subject a bit – just nice to share with people who understand.
I can relate so much to your comment…also diagnosed at 41; started at 13 with progressive worsening over the years. I have it in both feet and left leg. We have family in town for the week and I know I will end up pushing myself too much this week, and pay for it with extra swelling for days after they leave. It’s either that or I feel like I am holding the group back from activities because they know I can’t participate.
I know what you mean.
Mine starts from my toes to my knees. Last year in Berlin with friends, I really felt I was holding them back. It was a horrible feeling. My kind brother in law said next time I’m getting you a wheelchair, I can see how painful and difficult it is for you. I odn’t really want that either… When it’s just the 4 of us we often visit places and then return in a taxi – not so easy to do in a bigger group. I decided that was the end of midsummer trips…
We went to Disneyland Paris in April with our son and granddaughter – well I’ll let you imagine how I was at the end of each day. Yet it’s important for me to build memories with my grandchildren.
So pleased to see ‘The Lymphie Life’ in my In Box today. I have had lymphodema for 9 years now, both legs, primarily in feet and ankles, after being bitten by mosquitoes on an unihabited Cook island, just out of Aikutaki. I literally looked like a burns victim from toes to groin on both egs and it had gone into cellulitis. I was taken immediately to hospital on y return to New Zealand the next day, put on Iv antibiotics and have had to wear compression hosiery ever since ….recently put in to custom made flat knit ones at $695.01!
I have also had a dreadful chronic croupy cough since the day I was bitten ….I obviously had an extreme reaction.
I used to have beautiful legs, able to wear dresses, skirts, shorts ….now I have to wear trousers every day. I went from a size 8 shoes to an 11 and my right foot is even distorted now.
i really haven’t had any extra assistance in the Lymphodema Clinic at the hospital. My doctor is astonished that I never had lymphatic drainage done evn and the latest thing, long overdue, offered to me is a type of farrow wrap which looks like a cricket pad, velcroed over one of my legs wth a thin stocking over it to keep it in place …it’s too big for m, forms ridges round the ankle and difficult to remove in the morning.
Thw one for my other leg didn’t arrive and now my lymphoema physiotherapist is giving me a whole, closed in / pull up white padded one for that leg, arriving on July 16th.
Because I have Nurse Maude Care Support workers put my hosiery on each day & remove at nigt, they put the night compress on for me …but to get them off so I can shower in the morning is difficult ….not sure how I’ll manage with this other one ….and how stupid to have a different style on each leg!
With the ‘so called’ professionals there really is very little understanding of things or much thought put in to the treatment . I have become so frustrated with it all, powerless to get any real help ….So, it is So Good to have you there with this site, Alexa. Thank you!
I have had what some would consider a mild case of Lymphedema for 22 years. I have heard things like “why are you complaining”, “no one notices it but you” , “it’s not that bad”. But I still have the same pain and burning when my leg swells; I am still bound to wearing day and nighttime compression, MLD and pumping with the flexitouch. When I think of how much of my time involves dealing with Lymphedema, it can be overwhelming. Thank you for sharing your story :)
This! I am right there with you.
Thanks for sharing your story. Your thoughts, as well as the comments from others, make me feel a sense of relief. Finally someone who really understands! I have lymphedema in both feet and left leg. I hate that burning, throbbing pain when I have been on my feet too long. I think part of why you felt angry on the bus is the pain itself…makes me sooo irritable!
Have you ever tried toe compression? They are ugly, but it has made a world of difference to me in being able to go longer periods of time without needing to elevate.
Hi!! Cindy in NYC here…my ‘King”, Ric has mild lymphedema from his diabetes, and though we manage his numbers, and everything else well, with a combination of meds/compression stockings and the machine…I do have to keep vigilant. We can totally relate, how it feels when a person with LE gets on MTA public transit, and it’s a sardine can. And you ‘don’t look disabled or challenged’. That said, in NYC the buses ‘curtsy’ in front – so that’s good, but there’s also a flip side. Since people with walkers, mobility carts and etc seem to get dibs on seats. I try and be as polite and understanding as I can. Gotta admit, it doesn’t always work. Ric will sometimes carry along a cane, since his weight creates knee trouble. That often ‘broadcasts’ that here is a lymphie warrior – one who might JUST need to sit down? Drat…
I was so heartened to see your post in my inbox this morning. I am one of the “milder” ones I guess, with my LE a souvenir of breast and lymph node cancer. I sure do relate to the throbbing pain, also fatigue is a real problem. So hard to be the family matriarch and stay involved in all activities, but I am bound and determined to do it. Left arm is the affected limb. I pump 2x a day, and use the Iday Juzo compression sleeve and the costly Jobst Relax at night. I never knew LE existed before its “debut” with me, and I hope I have never inadvertently ignored anyone’s pain. We so need to be assertive advocates for ourselves, speaking up, flashing the sleeve, asking for accommodation etc. Even though my arm is the issue, I think carrying the cane is a good idea.
The bus service where I live actually doesn’t allow standing. That helps a lot. I think it’s sad the people know and still won’t show kindness. So sad. Next take a deep breath, say a quick prayer and ask. Thanks for sharing your experience.
I have no problem asking someone to give me their seat. Do it all the time. If I have to be in a line I also ask the person in front and in back of me to hold my place while I go and sit down. Another thing I do is go up to a guard (especially in airports) and ask for the handicap capped line or even a wheelchair if the line is horribly long. My leg thanks me for it!
Recently, I was at an event that was primarily standing roo only. Usually, I have no problem standing but lately my whole lymphatic system is on fire & my leg, more painful. Of course, a person gave up one of the few seats to a woman in crutches, but I didn’t want to lean over another person with a seat & let them know first about my condition & second that I could use their seat if possible.
It got me thinking that people should be able to apply for something like the disabled parking permit, but for seating for public transportation & where possible events. There have to be many others who suffer from more “hidden” but painful conditions like lymphedema who could benefit.
Alexa, thank you for sharing your story. I do believe that we need to be able to speak up for ourselves in situations like the bus. I identify the youngest, most able-looking male, look him straight in the eye, and say something like, “Excuse me, I have a very painful condition called Lymphedema in my leg (show him the leg, compression and all), and it would be very helpful if I could sit down. Would you mind giving me your seat? I would be very grateful”. They are medical professionals, they should get it. But expecting them to know you are in pain without speaking your truth is not reasonable. Give this a try and let us know how it goes.
You got that right! When I mention hubby Ric’s LE to people, I might get… a blank look. “Lympha-what?”, listeners will reply. Translation: that non-LE’s need to be better informed about this condition. What it means, and how it can impact a person’s comfort and movement. I blew out my left knee awhile back and walking was for a month – pure agony. So I have some understanding of how LE impacts a person’s body. The simplest everyday activity – flights of stairs, pushing the shopping cart, getting in and out of cars, the subway, the bus…Hey…To get a real appreciation for mobility try having your own, impaired..right? Sometimes that’s enough to make the penny drop, and create awareness.
My son, almost 13 years old, has LE in his left leg. No way someone would offer him their place in the bus or train, even when bandaged… :-/ He looks quite healthy from the outside, he’s doing lots of sports, mainly in the water (he plays Waterpolo) but there are times when he’s hurting. Plus he’s prone to catch every bug that’s around. He’s home right now with a stomach flu, poor baby ;-)
Thanks for this post. I struggle to ask for what I need. Sometimes I work long hours and the other night had to stand out in the heat at an event. All of a sudden my toe wraps were strangling my toes—some of you know what I mean. I had to get them off—immediately. There I was in the middle of an event. I sat down, removed my foot ware and unwrapped them. Someone asked what happened. I ended up explaining, but that was far more than that person wanted out of this exchange, I’m sure. I think it is hard for folks to wrap their heads around the notion that this is every day for the rest of my life—I am otherwise healthy, able bodied, I Mountain bike and road cycle (which makes me swell, but helps me drain fluid that I think has been stuck). But people then assume that means we don’t have pain. Such a contradiction for folks, for me. Thanks for giving us space to deal with it.
I am thinking of asking for a handicap parking permit at work because sometimes, not all the time, but sometimes at the end of a long day, it’s just hard to get out to the car—compression getting uncomfortable, legs heavy. Other times I”m fine, but is it okay to use the permit on days when I know I’m going to be there really late?
My word, I so understand your plight. I’m not sure if I could choose a seat as they always cut into my thigh. I’ve had lymphedema since 2006 when a surgeon removed 50 lymph nodes from my abdomen. He told me that I would get a “puffy leg.”
Now, after 2 surgeries, I am still bound to stockings, pumping and wrapping. I have a garage full of stuff from my recent divorce. I can’t go work on it as I know that my leg will suffer. Alas, I will wait for the heat wave to break. And ugh, when sitting, I always try to keep my leg up. I can’t stand the wrinkling that occurs behind my knee. How often do people watch me grab my stocking and pull it up? Or readjust at my thigh high to unwrinkl the silicone? I’m not even aware that I do it anymore.
I know that my ex said that my condition and routine were not a factor as to why he left me in the middle of the night. But I know better. To be restricted by heat, always needing a booth in a restaurant, always needing to go home early in the evening, etc., was most definitely one of the reasons. After 28 years of marriage, “in sickness and in health,” meant nothing to him. Now he keeps company with a woman with two good legs and no need to travel with a pump.
I actually prefer that he not be by my side at night. He always went to bed and never offered to stay up with me. Even when we did come home late at night. Certainly I would have told him that he should go to bed. The offer always would have been nice.
I yearn to work again. I have to work again. I just don’t know what type of job that I can handle. Surgical technology is no longer an option as, you well know, I wouldn’t be able to stand too long. But I will say this. I follow you. And I tell myself, that if Alexa can do it, then I can do it. You are our beacon of hope and determination.
Even with my lymphedema, I would have given you my seat! I could pick out those puffy legs in those lovely red shoes. I’m grateful that I can even wear shoes. For years I could only wear slides and maxi dresses. My leg whose huge. And then come skinny jeans!!!! Seriously!
Thank you for your posts and positive attitude. You are so beautiful and bold. As my sister-in-law reminds me, “you’re a Bad Ass!!”
With great admiration for being our spokesperson,
Hi to everybody from the Big Easy!! Ric and I have finally made our move, retiring to New Orleans. Where I am happy to say the VA Hospital is state of the art: very much in the ‘groove’ where LE is concerned. Early in July during the grueling eight day drive from NYC to Louisiana in the packed van, Ric developed a leg rash and extreme discomfort. Unfortunately we’d packed away the compression device. Once we arrived here in NOLA we headed straightaway to the VA. He was given an examination. And his right leg, by then somewhat swollen and inflamed, was wrapped in a heavy medicinal bandage. We were told to ‘let it be for a week.” We complied. At one point, when I spoke to the nurse who treated hubby’s leg she said, “Oh, sure…you can use the compression device, no problem..” But actually five minutes in, his leg began itching as though it was on fire. We unplugged the compression mechanism…and waited a few more days. It’s now a week or so later as I write this and Ric’s inflammation and swelling are vastly improved. So, a bit of LE humor this morning. (Do not underestimate the power of laughter when dealing with LE) There we were sitting in our fave breakfast cafe after unpacking and boxing things to move back to our new place. I suggested we might resume the compression device treatments. I said to hubby over coffee, “Look, honey I think it’s time we try again. It it’s too stimulating, we’ll just turn it off. I won’t be upset, honestly. But I look forward to our sessions – besides, they really help you perk up, don’t you think?” We were so rapt in conversation, we did not notice a man at the next table, and when we looked up, he said with a grin, “Hey lady, whatever floats his boat..!!” Hysterical!!
I’ve been following you and reading your articles for a few years now, and you continue to inspire me and make me proud! Our stories are so similar, in my head, it’s like your my only friend who understands the challenges of Primary Lymphedema and I really appreciate you.
Stay on the case. I sometimes hear “lymphie-what?” when I speak about hubby Ric’s. Vastly improved now BTW – by physical therapy, massage, bicycling, and medium weight compression socks. I think sometimes we lymphie warriors must be our own advocates. That’s fine by me. At 71, I now take every opportunity to make people aware of LE. Suggestion: when you find yourself in a conversation and you feel comfy with the other person, and medical issues become a topic, gently introduce the subject of LE. Ask them if they have ever heard of it: then, tell them what it is, and what the letters LE mean. What your own LE means in your life. We sometimes call this a ‘teaching moment’. And far from being ego-trippy, it can be a great opportunity for you, personally to bond closer with a friend, or co-worker, create some understanding…and maybe even (this happened to me) learn that THEY in fact know someone with this condition. And thought they were unique in dealing with it.