What to say to people?

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AnnetteS
AnnetteS Member Posts: 180
edited June 2014 in Lymphedema

I have LE in my right arm.  I was wearing a compression sleeve until I decided it did not fit properly because it left red welts on the wrist and upper arm.  I am scheduled for my two weeks of massage and wrapping lessonsin about five weeks (the soonest I could get it with out missing work----which of course I have NO sick days left after this past year)

I have lots of comebacks for the comments about the compression sleeve (which, unfortunalty not many people asked about)----my favorite is that it covers up an obsene tattoo that I got when I was drunk)

Anyway, I have had three people ask me why I am going to go to PT for two weeks when my arm doesn't even look swollen.  (it IS swollen....I can see it and feel it but they can't. My rt. elbow is 3 cm larger than the left ).  I am lucky that I am not experiencing any pain with the LE, yet.

I told them that if this goes untreated, even if they can't see it, it could get worse and worse and it will lead to fibrosis, a hardening of the tissues and my arm will become rock like.  I also explained that the extra fluid in my arm is like an incubator for bacteria and any nick in the skin could result in another infection and me running around with an iv hanging out of my hand AGAIN

What else should I tell these people? Keep in mind that these are people who are in my life, not just a random stranger in the elevator....

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Comments

  • badboobee
    badboobee Member Posts: 54
    edited September 2011

    Ok, well I am considered the class clown. When I explain the swelling in my left arm to people I actually show them the swelling by pushing things into my skin that leaves an imprint, paperclips, quarters, pencil tips. Sometimes I make a design. Then they are truly horrified but I laugh.

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  • AnnetteS
    AnnetteS Member Posts: 180
    edited September 2011

    Badboobee, I did the same thing, but got the response, "well at least it doesn't look swollen"

    One entertaining thing about this LE is the cool patterns I often get in my arm :-)

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited September 2011

    Annette, if they don't get "This is chronic and will get much worse if I don't treat it now" then there's really not much more you can say.

    You might try pointing out that if you had diabetes or high blood pressure you would have to be on medication all the time, even if your blood sugar/blood pressure appeared normal since your body wouldn't be capable of maintaining that normal. Tell them MLD, PE, garments are the "pills" for your chronic condition.

    Then change the subject because if that's not enough then they don't want to know.

    Best of luck.

    Leah

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  • Suzybelle
    Suzybelle Member Posts: 920
    edited September 2011

    I have several people in my life who have behaved like I was making up the whole LE thing...when I would answer a question, they would respond, "Well, I've never heard of that." or my favorite, "Well your arm looks fine to me."   I would just change the subject or start talking to someone else.  I don't have the time or the inclination to justify what I'm having to do to be healthy and halfway normal.

    I am all for giving an honest answer to a rude question - I figure if I answer honestly, they will learn about LE and what people have to go through to deal with it.  I am not going to argue with someone over why I need to do what I'm doing.  They can go jump in a lake.

    Funny thing, though.  I did have one woman (who acted like I was making the whole thing up) come up to me one day at church and tell me that she had met a lady who had LE and you would have thought she had discovered how to split the atom or something.  She was all wide-eyed and sincere about it.  So I'm not a liar anymore because she talked to someone who has it, too.  Tongue out  People are so funny!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2011

    Gee whiz, Suzy, I wonder what this other woman said or looked like that convinced the nonbeliever. LOL about your line on her thinking she had discovered how to split the atom! :-)



    You know, I will admit this here because I'm sure you guys won't judge me. I really am a decent person, good natured and kind. However, there have been times when people who don't understand my journey and experience have sort of minimized it, and I will think to myself that a little bit of the same experience might go a long ways in helping them gain some understanding. I really wouldn't wish anyone ill, but I do have these transitory angry thoughts and feelings at times. However, I try to remember that prior to my experience with BC, LE and recon, that I hadn't a clue either.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited September 2011

    Tina, we've all had those thoughts. I love that the woman thought she'd split the atom: one woman with LE is clearly making it up, two is a bona fide condition!

    So few people "get it" unless they've "got it".

    Kira 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2011

    That IS really interesting about the woman who became a believer when she met a second woman with LE. Yet another reason why we need each other, and we need to be visible!Cool

    To that end, the Lymphatic Research Foundation has fund-raising, awareness-raising walks scheduled this month in Texas, New York, and Massachusetts. Those of you who are within hollering distance, don your stupid medical-beige garments or your bandages and get out there!
    http://www.lymphaticresearch.org/main.php?menu=&content=events&txt=Fundraising%C2%A0/%C2%A0Events

    Yes!Kiss
    Binney

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