What do you say...?
Hi ladies,
What do you say when people ask about your sleeve/glove/wraps?
How do you combat the feeling that you'd prefer to go out as little as possible? I do hear that a lot of people just don't go out anymore after getting LE, and I can certainly understand why!
Thanks,
Karen RB
Comments
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Karen, on stepup-speakout, we put in a "coping" page, and for some weird reason, LE is shameful and embarrassing, and we do have a tendency to hide.
But, it gets better and it gets easier.
Here's what's on that page--there's also a portion on the emotional adjustment--and it's huge and an on-going process
When People Ask: What is that on your arm/hand?
I got the question the other day at an outdoor festival and it was hot as can be. I explained that I hadn't done anything to my arm but that I had lymphedema. Then, I got the next question, "What is that?" So, I tried to make it short and said that it was a result of BC surgery and treatment and it was sort of a pain in the butt. Then, I got, "Well, at least you're alive." It just struck me wrong -- I started to say, yes, I'm alive and you are too and you don't have to wear one of these freakin' sleeves! I'm very happy about being alive, thank you! I know my treatment saved my life but sometimes I just get a little irritated with these conversations. Whew -- I feel better. Thanks for listening. Keep cool swell sisters. - rrs
When I don't want to talk about it or explain it, "I got a very bad boo-boo and don't wish to discuss it." - Spunkygirl
Thought I'd add my 2 cents here----I work as a Nurse in a hospital and get this question all of the time from patients and family. I tell them the truth--it's a result of breast cancer surgery. I'm not offended nor do I feel the need to become defensive when they ask-- it's human curiosity. I use it as an opportunity to "educate" people-how else are they to know unless they ask?? I would venture to say that most of the population that has experienced lymphedema had little clue as to the whys and reasons that we wear these lovely, hot, ugly sleeves before diagnosis!!!!!! None of us asked for cancer but why waste time and energy getting upset about something so trivial as this "question"? - katiejane
Hi all - I'm afraid I don't do much for the lymphoedema (Brit spelling!) cause in this respect. I've gone for concealment/camouflage as much as possible with coloured sleeves/long sleeves/three-quarter sleeves and occasionally no sleeves at all. I HATE being questioned by people, whether I know them or not, about my physical appearance. I think it's downright rude. I'm happy to talk about lymphoedema to people, but on my terms, not because I've been cornered and asked about how weird I look. I find even the most 'attractive' sleeves extremely unsightly and I'm more than happy not to see my own for most of the day! - Bahons2
It does get annoying. But I find myself often asking other people I meet what they did to their own wrapped/bandaged/casted body parts--I feel I am being a caring person. It's also because I assume it's due to an injury--would never dream of asking if I thought I was inquiring about something like breast cancer!
Once a car salesman about my compression sleeve--and then told me he'd worn one for years after a severe burn. I don't ever tell them b/c, if it's a stranger. If they ask "Do you have carpal tunnel?" I say "something like that." Sometimes my dear husband speaks up and tells them "it's old age" and that shuts them up. Once a waitress got so insistent and I ended up telling her everything--and was pretty annoyed with her. I think she was sorry she asked. Sometimes I just say "I have edema" and leave it at that. Let them look it up if they like. - inspiewriter
Self-Consciousness in Public
I have bought kids tights (multi-colored with flowers etc.) to cover my sleeve during the day. I cut off the legs and there's your covering! certainly cost effective. - msmarymac [Note: when using this suggestion, make sure the tights are large enough around that they don't add unwanted or uneven compression.]
Juzo Colored Dream Sleeves are wonderful to coordinate with your outfits. OneBadBoob
LympheDivas has a line of in-your-face garments for those days when you're up to shedding the camouflage and daring the world to ask you about it. -Binney4
These are just a few approaches. The first time I wore a sleeve in public, I was certain everyone was staring at me....
Hang in there, it does get better.
Kira
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If it's a random stranger while out and about, I just say I had surgery, my arm swells, so the sleeve helps keep it down, then I start to move again. If it's someone I will see again more frequently, I take the time to explain the breast cancer connection if they ask. Most people are asking out of concern or general curiosity. I always get more questions when I'm bandaged. Right now most people ask because the follow up question is... Is it hot?? To which I always answer yes, but everything swells more when it's hot. I think we all feel singled out and aware of others' reactions when we start with bandaging or garments. Eventually I got used to it and just go about my daily life. Most people are sympathetic and a lot of times people offer to do stuff for me (lifting, carrying etc.) and I let them if it's heavy.
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Like GottaloveNed I just say I have swelling of the arm if I don't wear the sleeve. If they ask more I will tell them it is from lymph node removal. Like katiejane says it is a chance to educate some people. I do think they are just curious. It is interesting how little children have to touch the sleeve.
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Becky, I work with students with autism and they always have to feel the sleeve each time we meet. One little guy I work with wanted to know if I would blow up and pop if I didn't wear my sleeve. I love the perspective of little ones.
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My new line is: " I have a vascular condition"....because I really do not want to have a stranger express opinions about how " lucky" I am to have LE in lieu of other possibilities, how they have carpal tunnel too, or how I am going to get better.
A lot of people do not know what vascular means...and will not ask further.
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I was recently visiting my 3 yr old goddaughter. I told her we would go for a walk after I put on my sleeve. While I was doing so she put on my gauntlet and hat and said "Let's go. Now my hand won't swell!" I have the cutest picture of her in my garb! Yes, Laural, love their perspective. I even wonder if she knows what swell means!
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I get lots of looks regarding my inside out UnderArmour shirt. I bring it up if they are looking really curious, but trying to be polite by not saying anything. I say, "I'll bet you're wondering about my longsleeved fashion statement on this hot day?" They always admit yes. I say I had surgery a couple years ago and a permanent side effect is arm swelling, and the sleeves/shirt help keep the swelling down. Usually, they don't ask any more questions since that satisfies. Sometimes people are still curious, since most people have not heard of swelling as a side effect of surgery. That's when I tell them it's called "lymphedema". And we move on. I am not real happy about being stared at in public, but that's how it is. I have a daughter who is often in a wheelchair due to seizures. She often says, "Why do people stare at me?!" I tell her that we're all curious, and we all look around and observe as we walk. Usually people are not looking to be mean. But we are an entourage, for sure - me in my inside out shirts, my dd in her wheelchair, with a service dog/puppy alongside. For sure, we are going to get noticed everywhere we go!!
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kc, for some reason nobody tells you that about service dogs when you're contemplating one. They're supposed to be so well behaved they're socially "invisible," but that's ridiculous. Any time you walk through a mall or a grocery store or a restaurant where no dog has gone before, you'd better bet everybody's going to look at you.
In fact, the better behaved the dog is the more they stare, maybe because they can't imagine their own (pet) dog behaving that way. The beauty of it is that the dog at least captures their attention and draws it away from you and your daughter. My son takes pride in having people look at his dog, and it lowers the stigma of them looking at him. Also, most of the questions end up being about the dog, not about either of us. Nice "side effect" of service dog use!
When I was new to LE I used to get questions all the time. Now I only very rarely do. I think it has to do with the fact that I've gotten so used to wearing compression (either garments or wrapping) that I don't think about them much in public anymore. Somehow that translates to others accepting them as "casually" as I do. I'm much more likely to attract questions when I'm clearly self-conscious.
Karen, some women do become so self-conscious they start to be trapped in their own homes. That's sure understandable, but it's an impulse we really need to fight, because it goes nowhere good. As their Sisters of Swell we can understand it and hopefully be gently encouraging so they don't make themselves into lonely hermits. LE really stretches our horizons--nothing easy about it! But we do have each other, thankfully!
Gentle hugs,
Binney -
People usually ask me if it hurts, thinking the sleeve is like a brace. So I explain it is to prevent swelling from surgery to my lymph nodes and that it is a chronic condition.
@ ) and so on. -
I too don't always know what to say. I understand why they ask, but no one knows what LE is. I often will just say, it's a long story or it will be ok. I want people to be educated about LE but I don't want to go into the whole story. This forum is so great. I just found it last night. I was looking for somewhere to find out more. It is good to know that you are not alone.
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I....just use a gauntlet.....Good Lord if I used the sleeve??##!! all the questions....I was asked in front of a group of people....from a Retired School Teacher....who knew about my BC ...What is wrong with your hand.....when I explained it was from LE....her reply was....you mean your meds gave you that......it went on and on that day from so many people....NOT men just women......wouldn't you know.........I use LympheDiva's for myself....found things on clearance on seconds....I am trying not to be alienated....Liz
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I really struggle with this, especially in the summer.
I sometimes have professional events outside in the heat and I typically do not wear glove or sleeve when I am on the job in public.
Today it was so bad I put on the sleeve and hid my arm behind a sound speaker.
Then when I thought I was safe in my car driving away, I ran into a collegue and he asked me what it was, and I was so frustrated.
I say I had breast cancer and lost some lymph nodes and now my arm swells.
I hate it sooo much. I wonder if I will ever get used to it. My relatives get so upset I had to take it off at the wake for someone who died of cancer.
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Cookiegal, I have a collection of thin, cotton cardigans that I put on if I don't feel like showing off the sleeve.
When people ask, I usually tell them that I had an operation in which I lost lymph nodes and that I wear the sleeve to protect me from swelling. That satisfies most people and those who don't know anything about BC have no clue what I am actually saying, whereas those who do know about BC will know I had an MX and realize the polite thing is to stop there. -
If the person asking knows about the BC I tell them it's from the node removal, explain LE - the explanation depends on the circumstances/person asking.
If it's someone I know casually and they don't know about the BC I just say I get swelling, it's chronic, the sleeve controls it. That's usually enough since they're asking to show concern.
If it's someone I don't know at all (and that's happened) I generally don't answer. "What happened to your hand?" "Something happened". I don't think I have to give my med history to rude strangers.
Leah
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Then there are the children--they're trickier. With young ones, I just say, "It doesn't hurt," (and sometimes, depending on how scared they look add, "You can't get it.") That seems to satisfy them. Older ones want an explanation, and they can be persistent. If their parents are around they're usually embarrassed and trying to hush the kid up. Then I say, "Thanks for asking!" because I hate shutting kids down when they're asking questions. What I explain depends on how old they are and how interested they actually are. One kid I talked to now plans to grow up and find a cure for cancer--you go, kid!!
Nosy grown-ups aren't as much fun, and I'm sometimes annoyed enough to give them a very long, detailed explanation if they ask too many questions. It makes them squirm, because they really don't want to know the entire functioning of the lymph system, but I feel they deserve it. Ah, education! (NOT!
)
Binney -
Binney, that is funny about subjecting them to a long explanation. When I get asked by strangers it is often because they too have some pain or problem with the arm and they want to tell me ALL about it. Those people get gently led on, until I drop on them that I have cancer.
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"Cancer left me with a bum arm." That's what I say when it's someone who seems to be just nosy, not concerned. That usually shuts them up. I know it's not technically accurate, but it seems to work. If I sense the person is asking out of genuine concern or somene who seems interested as opposed to nosy they may get a little more explanation. Most of the time I do like educating about LE, but sometimes I don't feel like going through the ritual.
I seem to remember a thread a few years ago on this topic, and we started thinking of all kinds of funny responses. if I remember right someone had an answer like, "Trapeze accident" and someone else topped that with "Sex accident." Maybe it could be a "Trapeze sex accident!"
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I have recently discovered this very effective way of explaining it, which causes me little trauma. I say, "You know those compression stockings people wear to keep their feet from swelling? It's like those, except for my arm." Some people ask no further. It's enough for them to know it's not a recent injury with an exciting story, a fashion statement (as if!) or a sports performance-enhancer.
Time has been so helpful in how I answer this. I am no longer petrified I won't be able to do my job and will have to change careers, or that I'll never do anything fun again. Having some control over it and being kind of used to it has made me perfectly comfortable explaining it to strangers or people I haven't seen for a while.
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I started wearing glasses and hearing aids in kindergarten. I've been using a service dog for the last 20 or so years. The sleeve's got nothing on the dog as a conversation starter. That said, I like outfield, usually use the "you know how some people's feet swell? Well with me, it's my arm" line.
That said, I get very few questions that throw me. As a librarian, I'm used to all sorts of questions, so I tend to answer in general terms as opposed to personal terms, and I usually cite my sources.
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Ha! I like the sex accident. Although that actually happened to my uncle last year. He is 80 mind you, but always on the prowl. He ended up having to take his new amour to the ER to get her arm fixed.
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So I went to the dry cleaner across from the MSK breast center today...figured they see sleeves all the time....so the woman says I see those all the time and I always wondered what they are......
after years of seeing people...why am I the one she asked?
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you must seem quite approachable and she felt comfortable asking. i would consider that a compliment.
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Hello, Ladies,
I must be feeling troublesome this morning, but I want to add a bit of controversy to this mix. I think that we should try, try, try to educate people to the hellish reality of lymphedema whenever we can. I appreciate that there are so many times when we just want to go in a corner and cry, and so many times when we are just too darned tired to gear up to make the explanation "one more time", and for that matter so many times when we just want to go to that party and BE NORMAL. Nevertheless, I have been thinking about how hard it it to convince even my own family how distressing lymphedema is, and I think that unless we find the words to communicate our difficulties to the outside world we cannot be surprised that no one takes it seriously. I know (Binny, Kira, et al.) that is what Stepup-stepout is about, and hooray for that--I can't say how empowering it was to find that website in the first weeks I was diagnosed, and feeling like the rest of my life was going to be awful. But I think it is down to the rest of us, whenever we possibly can to say "Thank you for asking, because yes, I do have something wrong with my arm and it is serious, incurable and debilitating. My doctors don't know how to treat it, my insurance provider doesn't know how to pay for it, and my employer doesn't know how to cope!" (that'll get 'em running...) We do need more good research, more solutions, more concern from both the medical establishment but also Congress. Those of you who are old enough may remember how it was when we whispered about breast cancer, let's not whisper about lymphedema, too!
Woohoo, rant over--I go for "shark attack"!
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I think Quail is onto something here. I tried this out the other day in the airport: "Well...I have what's called lymphedema, which means my arm hurts and swells up, and this sleeve applys pressure and helps keep the swelling down. It's a side effect of breast cancer surgery, and unfortunately, there's no cure. But if you know any woman who is diagnosed with breast cancer, tell her to insist on meeting with a lymphedema expert before her surgery, because there are things that can be done to reduce the risk, but most surgeons downplay that. Lots of women get breast cancer, and I wish they could all learn how to lower their lymphedema risk. So I'm glad you asked."
The person who asked was a man--he had good-naturedly asked 'so, what did you do to injure your arm?' --and afterward he said he had never heard of lymphedema but he has a wife who worries about breast cancer, so he would definitely tell her about it. Then we had a short conversation and I told him some more about LE, and that was that.
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Oh, Quail, brava! Not only a chance to educate, but a legitimate opportunity to rant constructively--I love it!
Binney -
If the person asking me doesn't know I have BC I don't want to be the one to educate them since it means telling them I have BC. If they don't already know it's because I don't want them to know (though plenty of people do know). Maybe it's because I'm Stage IV so the conversation about BC is different. So I usually just say "controls swelling" or something like that.
Leah
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Galsal...you are right.
I am ridiculously approachable.
I have a certain service industry look to me.
People order drinks and wheelchairs from me on planes, and ask me for help finding things in stores.
I never minded until now.
I just want to crawl in a hole everytime someone points it out.
I would get cokes for everyone on every plane, pick out flattering coats for all mankind, and give directions to every tourist on the subway everyday just not to have LE.
Heck I would even tell people at TKTS what to see.
Sorry if that was a bit of a rant. My LE recently started popping up in my hand and I am really upset about it.
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Cookie. I always considered it my "librarian" look. People ask me for directions, even when I'm the one from out of town. They want me to tell them where they can get this fixed, or that cleaned...
Maybe that's why questions don't phase me.
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LOL, I get taken for "personnel" a lot too. Must be all the waitressing I did in my youth.
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So...one of those fancy researchers needs to do a study to find out if having that 'ask me' look is a particular risk for developing LE! Ladies, I'll bet the reason you're approached so often is that you have a naturally inviting demeanor about you. Facial expression, posture, overall body language...I think some people send out 'don't even think of asking me a question' messages and others just appear friendlier. So I think you are in the friendly group, and that's a good thing (except for the nosy-question jeopardy, of course).
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