Dealing with feelings of self consciousness?

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Emilyc
Emilyc Member Posts: 31
edited October 2015 in Lymphedema

I am very aware of my hand/arm swelling when I am out. I see people looking at my sleeve and I cringe when someone asks me what's wrong, what happened, or the myriad other comments that occur. I am trying to be better about this as I know it's an important step to conquer but I don't seem to be improving much. I realize that people care and their questions only reflect that...although some comments are off the hook.

What has helped this group to move past those feelings??

I have done pretty good at the gym with this because I know the people and don't mind it as much since I am more comfortable there. Anywhere else..............not so great!

Any ideas or thoughts??

Comments

  • glennie19
    glennie19 Member Posts: 6,398
    edited August 2015


    What kind of sleeve are you wearing?  I have a tied-dyed one and gets lots of comments about it. **oh, cool sleeve** and there are ones that look like tattoos also. Having a "cool" sleeve kind of changes the perception that it is a "medical" issue.

    And of course for the nosy people,,, not family/friends/people you care about,,, but the nosy people at the mall or grocery store,,,,  you can come up with answers like:   "pumped too much iron so I swelled up".   "Lost a fight with an alligator".   etc, etc,,,, Cuz people who you DON'T know, really have NO business asking.  Do you go up to someone in a wheelchair and say: "how did you end up in this chair?"    I don't think so.  Cuz in reality,,, people do not have the right to know your medical stuff,,, that's why I say, come up with a "funny" answer for the strangers who ask.  (I've gotten serious intolerant since I lost all my estrogen,, have NO patience for people anymore.)

    And a lot of people wear compression for running, etc. The last guy who asked me about it thought I was a weight lifter, cuz people at his gym wear them to lift weights so he thought my tied-dyed one was "rad".

  • Emilyc
    Emilyc Member Posts: 31
    edited August 2015

    My worst response is when a total stranger comes up and touches the sleeve...........sends me into orbit!!

    I am somewhere between hiding my arm and a tie dyed garment!!! Baby steps for me.

    You are right, though.....I will come up with a standard response for the idiots!!!

    Last year I saw a bumper sticker that said " I ran out of estrogen and I've got a gun!!!" Still chuckle about that

  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2015

    Emily, I hear you! The "How you can cope" page at StepUp-SpeakOut has sections that might help, like the ones on dealing with the emotions that LE brings on, looking lovely in your sleeve, "when people ask", and self-consciousness in public.

    http://www.stepup-speakout.org/How_You_Can_Cope_wi...

    Sometimes I don't mind educating people who ask, though they usually mind it a lot when I go on cheerfully about it until their eyes glaze over. When I don't feel that open, my favorite answer to their question of what happened to my arm is: "Trapeze accident."

    Here's a thread from earlier on this board, called "What do you say?"

    https://community.breastcancer.org/forum/64/topic/...

    And here's another called "I was attacked by a shark!"

    https://community.breastcancer.org/forum/64/topic/...

    As you can see, it's a problem we all deal with. And the beat goes on! Hugs,
    Binney

  • Cvasquez38
    Cvasquez38 Member Posts: 3
    edited August 2015

    I'm feeling the same way

  • kriserts
    kriserts Member Posts: 224
    edited August 2015

    I wear the sleeves--white ones--when I cycle. Luckily, some cyclists now wear what they call sunguards, which protect from the heat, so everyone thinks I'm wearing those. But they'll ask me how they work, why I wear them in the early morning when it's not hot, why I always wear them, etc. When they ask I say I had surgery on my arm (it's true, in my arm pit) and I have to wear compression when I exercise. They accept it pretty fast and that's that. I do feel self-conscious sometimes, but I've accepted it's the price I have to pay to keep doing something I love. I think if you can calmly deliver a line that's true but doesn't give the full download--ie, surgery on your arm, something like that--people won't press. Think about it--did you know what lymphedema was before you got breast cancer? I sure didn't. Most people don't and will take a quick explanation at face value.

    I know some people give the funny answer--"attacked by a shark"--but to me that sounds defensive and will only elicit more questions.

    I wear compression in the gym, too, and I kind of like the fact that people will think I hurt my arm, because I can't lift as much weight as I used to and feel like a wimp. ;)


  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited August 2015

    I absolutely hate it too and have some recent experiences that were like a hard smack in the face. It never ends. I'm going to yoga tonight. I saw how bad my arm looks today and I don't even want to get dressed and go. I will do it but I absolutely HATE it. Reading stuff about coping hasn't helped me a single iota in 3 years. I'm grateful to be alive and that was always my mantra. I'm not feeling so grateful today. I hate it that much.

  • crystalphm
    crystalphm Member Posts: 1,138
    edited August 2015

    Mostly I dislike being asked, and most people do ask as I have a job where I am with the public.

    So I look at the whole thing as educating people. People think breast cancer is about pink ribbons and free boob jobs, so I tell them the truth, breast cancer has lasting rotten side effects. I am not sad or morose, just more educational in tone. They asked, if they don't want to cringe on the answer, they should learn to not ask.

    But I kinda like the thought of saying with a smile "A Shark Bite !!!"

  • runnergirl26
    runnergirl26 Member Posts: 82
    edited September 2015

    i am with you. i am still struggling. its been a bit over a year for me. i pray for a cure but not holdin my breath; eretile dysfunction gets all the funding lol

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited September 2015

    I say it's a souvenir from cancer surgery. In Florida, shark bite could be true.

  • carol57
    carol57 Member Posts: 3,567
    edited September 2015

    I'm in a sling for six weeks now, after shoulder surgery. It has given me a new answer to these kinds of questions, and I will use it when the questions are about my compression gear: I injured myself trying out for the discus event in the senior olympics, but it was worth it, because I have a world record. And then, after the 'really?' I will continue to explain about lymphedema.

    I really don't mind so much when people ask. I am an open book in many ways, and I think we're all different in that regard, and those who prefer privacy are sure entitled to it.

    Once, a woman in the airplane seat next to me asked if I had LE. Yes, and then she showed me her own swollen arm. What dropped my jaw next is that she said she'd been told there's nothing to be done; no effective treatments and she just had to live with it. She had a sleeve and gauntlet in her bag but wasn't wearing it, because she thought it was useless. I was so glad she asked me about my sleeve, because we had a great conversation and I was able to steer her to step-up and other resources so she could get started finding some real help to manage her conditioin.
  • glennie19
    glennie19 Member Posts: 6,398
    edited September 2015

    OH, good for you, Carol. Poor woman,, being told nothing to be done. Damn uneducated medical people!!

  • Morwenna
    Morwenna Member Posts: 1,063
    edited September 2015

    When I get asked about my sleeve and glove (normally, "what is the matter with your hand?"), my short response is "oh I have some swelling issues so this is like a compression stocking", and that is normally explanation enough.

    I don't often go into all the lymphedema/cancer story, as it is often my patients who are asking!

    In my experience people don't REALLY want to know - not that I mind explaining. The worst question for me is " how long will you have to wear that for?"

  • carol57
    carol57 Member Posts: 3,567
    edited September 2015
    Glennie, at next week's World Congress of Lymphedema, there is a session about improving medical practitioners' education about LE. The WCOL attendees include mostly clinicians (docs, PTs, OTs, nurses) who already know a lot about LE, so I presume the session will be a strategy discussion of how to get the knowledge out to the general clinical population. A much needed discussion and I will be most interested to hear what people say.
  • glennie19
    glennie19 Member Posts: 6,398
    edited September 2015

    Carol, I cannot wait for you to report in after the conference !!

  • TNNurse
    TNNurse Member Posts: 58
    edited September 2015

    I was self conscious at first. Now, I think of it as their problem, not mine. If a child asks, I politely say it is for a problem caused by my cancer surgery. If an adult asks ( someone I do not know), I politely tell them more than they want to know...breast cancer, lymph node removal and make them as uncomfortable as I can for asking a total stranger such a personal question.. I do it very nicely. If they ask if it is for an injury I just say "No" and walk away. It really depends on the look on their face, how they ask and if I am having a bad day or not.

  • Kicks
    Kicks Member Posts: 4,131
    edited September 2015

    Not the least bit 'self conscious' - no reason at all to be.

    I would rather someone ask an honest question and get education than choose to dwell in ignorance. I have sat down on the floor in WalMart to explain (at child level) with the Mom's permission several times. We usually wind up with a lot of adults standing around and then asking questions. Men will often ask Hubby for info too at times.

    I would much rather someone to ask me questions than to not. Long story that I won't really go into but at a sporting goods store I go into and buy stuff at apparently some young'whipper snapper' had told the 'higher ups' that they should instruct the sales personnel to not talk to or sell flyfishing rods or pistols to women with a sleeve on! Say what! Thankfully one of the other/older personnel did ask me about my sleeve he had been told that based on what 'whipper snapper' had said they were told to 'discourage' women with sleeves from looking at guns and fishing. Well thanks to someone honestly asking, I was able to go to the higher ups and educate them.


  • carol57
    carol57 Member Posts: 3,567
    edited September 2015

    kicks, that is a fabulous story about the sporting goods store!

  • glennie19
    glennie19 Member Posts: 6,398
    edited September 2015

    WTH?? Why should they NOT talk to someone with a sleeve on? I don't get why they wouldn't sell to someone with a sleeve on. Glad you were able to educate them.

  • AussieElaine
    AussieElaine Member Posts: 64
    edited September 2015

    maybe we're more laid back here in sleepy old Perth, but I have only been asked about the sleeve a couple of times. I believe most people are not very observant and more interested in themselves haha. But I am the one who has the issue because to me the arm is repulsive and I avoid looking at it. I can only hope that my recent LVA surgery shows results soon. I don't know why I feel like a freak since I would never consider anyone else with a disability or deformity a freak. I struggle every day (sigh)

  • glennie19
    glennie19 Member Posts: 6,398
    edited October 2015

    bumping for Jill

  • jill47
    jill47 Member Posts: 351
    edited October 2015

    Thanks Glennie😎very helpful

  • glennie19
    glennie19 Member Posts: 6,398
    edited October 2015

    Did you see the other thread, entitled: *I was attacked by a shark** many good lines in that thread.

  • AKJ
    AKJ Member Posts: 190
    edited October 2015

    I hate being asked questions about my sleeve. I don't mind it from people that I know but when a stranger asks I get annoyed. People walk around with injuries all the time and I don't ask a lot of questions about braces or bandages unless I know them. I know it's a chance to educate people but still....

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