How do you explain the sleeve?

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karody
karody Member Posts: 89
edited June 2014 in Lymphedema

I just started wearing a sleeve for lymphedema.  People keep askimg me what it is and I am having a hard time explaining it without a long conversation!  It seems like most person don't know what lymphedema is and I have a hard time explaining it to them.  Then, they wonder why I have to wear the sleeve since my lymphedema is mild and my arm is pretty small.  I truly don't mind people asking, I just don't know how to answer them without launching into a long explanation.  Does anyone have a succint way to respond to questions? 

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited July 2013

    I simply say it is a compression sleeve due to a complication from my breast cancer surgery. Most people are good with that much info. Those who are interested will ask for more info. And then I share more.

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  • Marple
    Marple Member Posts: 19,143
    edited July 2013

    karody~you may find this link helpful.  Some answers are serious and some are not.  http://community.breastcancer.org/topic_post?forum_id=64&id=752612&page=1

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  • Chrisrenee77
    Chrisrenee77 Member Posts: 1,032
    edited July 2013

    karody- I work at hospital and I have people (strangers) asking me all the time what it is.  Sometimes I tell them LE then have to do the long drawn out conversation of BC.  Other times I just say I have swelling in my arm and hand and the garment helps relieve the swelling.

    Have any of you had the rude/obnoxious person be so blunt about the sleeve? I usually get WTF is that on your arm, you must have tendonitis, are you a burn patient?  ugh people irritate me. 

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  • Momine
    Momine Member Posts: 7,859
    edited July 2013

    I say that I wear it for protection, due to an operation. Then people often ask if it hurts and I tell them no. Then they are happy.

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  • nibbana
    nibbana Member Posts: 464
    edited July 2013

    Tell them you were attacked by a shark!

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  • carol57
    carol57 Member Posts: 3,567
    edited July 2013

    Nibbana, I thought your standard line was about fending off a bear!

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  • Outfield
    Outfield Member Posts: 1,109
    edited July 2013

    I get asked several times a day at work.  I don't mind talking about my lymphedema, but I do mind talking about myself at work, so I try to keep it minimal.

    I usually ask if the person has ever known anyone that needed to wear compression stockings for swelling in their legs.  Most people have.  Then I tell them my sleeve is basically the same thing, except the swelling is in my arm.

    Sometimes they'll ask why I have swelling, and I'll say it's the result of a surgery.  I don't go into the cancer part.

    What I say and how I feel about answering has definitely evolved over time.  It's also made me more conscious of my own comments to others.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2013

    Outfield, I really appreciate your commenting that what you say and how you feel about it has evolved over time. I think that's helpful to know for those who are just starting out on this path. When I first got sleeves I was so frustrated and disappointed. What good are sleeves if you have to wear them all the time?!! I wanted a cure, a fix, not something to have to explain for the rest of my life. I felt so awkward, and I really believe people reacted to that feeling by noticing more. Now that I've been wearing them for (good grief!Surprised) almost ten years, I don't think about it, and people rarely ask anymore. I just project a nonchalance about it, and they respond by being nonchalant too.

    It gets better, honest!Wink
    Binney

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2013

    I usually try to get it into one sentence, I had breast cancer. lost lymph nodes, and now my arm swells.

    People are usually like, oh.

    It is strange, some situations people ask all the time, others they don't.

    At my new job only a very few people brought it up.

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited July 2013

    I just say to most people that it keeps my arm from swelling.  That is usually enough.  If I know the person I will say I had breast cancer, had lymph nodes removed, and that it created swelling in my arm.  Some are really interested and want to know how far up it goes, is it uncomfortable, etc.  It does not bother me when people ask. 

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  • carol57
    carol57 Member Posts: 3,567
    edited July 2013

    I just say that I have something called lymphedema, which is a side effect of surgery for breast cancer, and the sleeve makes it less uncomfortable.  I'm not bothered when people ask, either. I usually feel sorrier for them than for me at that moment, because people who don't know me do not know how to respond to my answer. 

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2013

    My explanation of the sleeves is similar to all of yours - the level of detail is tailored to the audience and whether they ask further questions.  Just wanted to add this though - I was once putting them on in the airport and the lady behind me in line started to help me in pulling up the back part past the tricep - I thought that was pretty sweet.  I have no idea if she knew what they were for - she just wanted to assist!

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2013

    Special K that is nice.

    The toughest is the tone change. I had a co-worker keep making a joke about basketball to me. I am a big basketball fan, but I do not play.

    Finally I said, what the heck are you talking about, and he explained the sleeve.

    So when someone is being cute about it, that is when it turned ugly.

    Someone at a wedding asked me in a really snarky way, (he is just a snarky guy), when I told him he started crying.

    I have social anxiety about the sleeve every single day. I have met people who see it as a war medal, I can't get there.

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  • carol57
    carol57 Member Posts: 3,567
    edited July 2013

    My issue is not talking about it really, but my bmx surgery was prophy, so sometimes it's hard to explain without getting into a lot of detail, yet still feel honest.  I did not have BC technically, and I'm one lucky person that I was able to skip the nasties that I'm in awe of the rest of you for dealing with and keeping your sanity intact. So when I say the sleeve is because of a side effect from surgery for BC, a little part of me feels like I'm being a little dishonest, because whomever is listening that doesn't know my story then thinks I had a worse deal in life than I actually did.  Is that too weird?  Of late I can talk about Angelina Jolie, but that launches a whole long conversation I don't want to get into, really.  I truly think LE is so under-explained that I really want to explain it to willing ears, so I don't mind responding when people ask. The answer sure can be tricky, though.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2013

    Carol, I totally get it.

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  • Chrisrenee77
    Chrisrenee77 Member Posts: 1,032
    edited July 2013

    I must admit, sometimes i tend to be a tacky. Especially to the ones that just won't drop it. Once I told a patient because he wouldn't drop it and kept asking more questions, I just wasn't in the mood that day to explain. I finally told him that I had an arm transplant and that I didn't care what color they used on me. I even told him that it looks/feels/ and moves real as well.  Was it wrong yes, but did it get him to leave me alone- yep. Mission accomplished. ha

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited July 2013

    I have sleeves(lymph nodes removed from both sides) for flying but sometimes wear one for the unexplained achiness I get in my left arm. I've only been asked about this once "did you hurt your wrist?". It was by a friend, who I want to keep as a friend. I told her it's to keep my arm from swelling after surgery.  DH & DS(15yr old) have not noticed. Just got back from family vacation. 3 flights each way. 12-13hours from 1st takeoff to last landing. I did wear long sleeves, over the sleeves, because I'm always cold. The gauntlet was visible & I rearranged the wrist part of the sleeve several times. Took the gauntlets off before using the airplane restroom & left them on my seat. My boys aren't so observant.

    I think with compression being so widely used in sports & by sports minded people, it "might" be mistaken for that. If anyone asked me I was going to say it was to keep my arms from swelling & hope that would be enough.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2013

    Chris Renee OMG!! Love it!

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  • Lettiegonz
    Lettiegonz Member Posts: 20
    edited August 2013

    I am flying to Illinois in the month of October. Do I need to wear the sleeves and why. Please help. Greatly appreciate

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  • Marple
    Marple Member Posts: 19,143
    edited August 2013

    Lettie, could you provide a little more info?  Do you have lymphedema?  Is it under control?  A few details would help with answers.

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  • Lettiegonz
    Lettiegonz Member Posts: 20
    edited August 2013

    Yes I do and it's is under control. Just worried of flying,that it may get worse. Thank you for your quick respond.

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  • szsz
    szsz Member Posts: 4
    edited August 2013

    I don't have LE, but I had a sleeve and glove prescibed for a long airplane ride last year. I use them now when I fly coast to coast. It is a good preventative, and if you already have it, the sleeve helps to keep it from progressing. I also wear compression stockings.

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  • Marple
    Marple Member Posts: 19,143
    edited August 2013

    Yes Lettie, if you have lymphedema and are flying I think it's recommended you wear a sleeve and glove when flying.  This link may be helpful.

    http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#Problems_Encountered_at_the_Airport 

    And here is a thread from these boards (there are likely more but it's the first one I found using the search option).

    http://community.breastcancer.org/topic_post?forum_id=64&id=797366&page=1

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