How Others Perceive Lymphedema

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How Others Perceive Lymphedema

Postby patoco » Sat Jun 10, 2006 1:28 pm

How Others Perceive Lymphedema

Discussion started by Gar 07/27/2005

Thought I'd post on a situation that came up today and ask for your imput. Today I was having a lot of pain in my legs so I was slow getting dressed. There was a knock at the front door and when I looked out the window I saw a young boy standing at the door with a plastic container. I didn't recognize him so i figured it was just someone collecting for a charity. Being that I was still in my night shirt, I wasn't going to answer the door.My sister was home but hadn't dressed yet either. But this boy went around to the other door and began peeking in the window. I motioned for him to go away but he just kept looking in. Figuring he wasn't going to give up, I answered the door. Turns out it was a child of our neighbor's who I had never seen before. His mother sent him over to borrow some sugar. I told him to come in and then I called out to my sister to see where the sugar was. While I was getting his sugar, my sister came out and started talking to him. After he left, here's what happened....

My sister was irate because I let him in and he saw my legs in all their lymphedemic glory. She said this kid was staring at my legs the whole time with a terrified look on his face. She said I should have never let him in. Well, now.... I felt like a piece of dirt. She said she was upset because I upset the kid. I told her I felt she was ashamed of me because the boy saw my legs. She said that wasn't the reason, that little kids get scared when they see something like that. Then she proceeded to inform me that my 3 yr old niece use to be scared of me. I never seen it... and my niece loves to come over and the first thing she says is 'When is Uncle Gary coming down?' She likes to play games with me and always has a smile on her face.

Did I miss something here with the neighbor boy? Honestly, I don't know where my sister is coming from. Maybe some of you can enlighten me on this. I certainly wouldn't want to scare any children. This completely ruined my day.



Gary, as the mother of 6 children, I can tell you that kids learn best by experience and explanation. Had you told the child to go away, he would have thought you were mean. Kids certainly do look at 'outside the norm' situations and wonder what is happening. They know enough that there are some things you don't ask about, too. As Moms, we tell our kids not to ask about things that might make someone uncomfortable. I assume that the child's mother may not be aware of your true situation, either, and may not even be able to explain your condition to the child. It probably would have been best had either you or your sister simply said something like, "I see you notice that I have/Gary has problems with his legs. They swell up sometimes and can hurt like they do today, but he'll be okay." and simply move on. Kids accept what you explain. They usually only get frightened when things are not explained to them. Their imaginations take over to create the explanation. You were a kid, Gary. Would you have been frightened or just wondered what the deal was? Kids are actually pretty cool human beings who accept things much better than adults and with far more honesty and acceptance. Don't worry about the kids. Explain just a little to them to make them understand the basics and they (and you and your sister) will be just fine. As for your sister, she may have had her own issues about the situation that don't include you at all. I HATE it when people come to the house and I am in my pj's - I think silly things about what impression I have left! I am sure she didn't mean to hurt you -- only to bring up that kids don't understand the situation. I am sure also that your niece simply loves her Uncle Gary and has figured out all the details because she is smart and someone probably clued her in. The neighbor boy just needs to catch up. You could help him out a bit by casually mentioning what is happening with your legs if you see him or his Mom again. You certainly haven't scarred the kid for life, Gary! Kids get more suspicious of what you hide than what you are free to explain. I would rather explain LE to kids than to adults and doctors all the time. The kids ask better questions.

Springfield, PA



Hi Gary

Kids are not firghtened of our limbs there curious
they stare, they think God look at those FAT legs

A child might say to its parent when passing them on the mall "mummy look at that ladys fat legs
There is nothing as honest or at times cruel as children

If a parent tells a child off for saying things like this
little ones dont know i always say dont shout at them for being honest

if there older then yes they need to be educated but then our doctors dont recognise lymphedema how can a child
there is so much on TV in books about obese people
Fat limbs just come into the same catagory to kids
and lets face it adults

i dont think your neice would be frightened cos you had lymph
more likely the depth of your voice or the loudness of youe laugh
even the crazy shirst you wear
once kids know you they stop seeing the bits that are odd and seeing you as a person

It isnt just kids that need educating its the whole world
top of my list is Doctors

hugggggggggg lovessssss



My two cents:

I remember many years ago, a little girl who came over to my parents house who wanted very badly to meet my cat, but when she saw him, finally, she ran away and clung to her mother. Apparently, she was afraid of the cat because she had never seen a cat as big as mine before. Sometimes kids are conditioned to be afraid of things they don't recognize or understand to be normal.

Kids who react with fear to me are easy for me to deal with because I know it is their conditioning, a past trauma, etc. that caused them to react to me that way. A healthy response by the child to you would be to respond with curiousity and to ask questions. I am (finally!) able to put aside my own issues with self-esteem and self-worth and feel empathy for that child in that moment...and respond to the child's reaction with kindness.

Like what was suggested before...explain and leave it at that. Everyone has problems, Gary, yours (and ours!) are just more physically visible than others.


P. S. It sounds like your sister could stand to deal with her own issues with your illness. If there must be blame placed in that situation, then ask your sister why she didn't say anything to comfort the child????

I think she used the child to express her own discomfort with your LE, not the child's. Your lymph legs are just as natural as her non-lymph legs....has she ever gone around flashing hers? Most people do.
There is no shame in that, just an opportunity to educate. Your sister, when she saw these "supposed" reactions of the kids, had the opportunity to educate those kids and she didn't because she was too busy being embarrassed or ashamed of your body herself. That's her emotional baggage, not yours!





Thanks so far for the replies. One thing I forgot to mention is that usually when my sister makes some kind of unusual or unkind remark I have to keep telling myself that the stroke she suffered in 1999 has had some impact on her personality and thinking. She lashes out sometimes not only at me but her husband and children. But usually she'll apologize after a while because she knows the stroke has changed her in many ways. She was always the most understanding person and I could always go to her for support. Since the stroke, she seems to criticize a lot about certain health problems I have. An example would be when I was taking care of my Dad I had to bring him to her house for the summer because my Dad didn't have A/C in his house. I can't take the heat very well. One day she just blew up and said she didn't know how her husband could stand having my dad there. The poor man was dying. I was struggling myself to take care of him, as was my sister. But it was just the way she said it and I told her "You're worried about your husband?" I said, "What about me? I'm practically killing myself doing all this caregiving when I could use it myself." She turned around and said that I had been a pain to her for thirty years. She would never have said that before the stroke. But it still hurts the same.

I've done a lot for my family over the years and never asked for anything in return. Why I get all this flack now when I don't need it is beyond me.





m whitcombe



Midge... Appreciate your imput and confidence in me. You know what? I told my sister how I felt about her remarks. Hey, if she still wants to think I was in the wrong that's her problem. If the neighbor ever comments to her about the situatuion, I am perfectly capable of explaining my illness to them. That's just the way I feel. Anyways, thanks everybody for letting me blow off some steam!

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Postby joanne johnson » Tue Jun 13, 2006 10:19 pm

Hey Gary,
Glad to hear from you! If you can stand one more reply...Kids are curious. They accept a simple explanation and that settles it. Adults can be less kind and ignorant. We are who we are and should be proud of the person we are.
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Kids & Lymph.

Postby PamelaS » Fri Jul 14, 2006 3:13 pm

Hi Gary,

Wanted to let you know that kids are often quite accepting of lymph. My 3 young great-nephews and nieces have seen me with my arm wrapped quite a bit and were curious. I gave them an age-appropriate (they're all 6 and under) explanation of why my arm looks this way and what's going on.

They've taken to calling me "Aunt Mummy" and that's fine. Try not to focus on it, as they kids generally just want to know you're OK and what's going on.

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Postby Lady8i8 » Tue Jul 18, 2006 11:30 pm

I hope nobody will mind my jumping in with both tree trunks! We have often noticed that people will stare when they see me in public. I have on occasion been very self concious about it but I am working on it.

Kids do tend to get a wide-eyed glaze on, but once they see you smiling at them, or you say hello they normally ease up. I often hear kids pointing at the Wal-mart scooter and asking what that is, or commenting on my legs that are "so big". Parents are usually mortified, but I always smile and tell them there's nothing wrong with looking for knowledge. My favorite is when the kids jump out of that way when they see you coming. I usually stop the cart or slow right down to almost stopped and tell them not to worry that I wouldn't run them over. It almost always gets a smile.

My stepkids were young when I was finally diagnosed with LE. Now they're 12, 14 and 15 and are fairly knowledgeable about LE. Whenever they have been in earshot of someone making a comment they are usually quick to correct them, and tell them she she's not fat, she's their Mommy and she has Lymphedema cause she had cancer ..

The child was likely extremely curious about something he hadn't seen before. By no means does that mean he was afraid.. what a horrible ting to say to you!! Sometimes well meaning people say the worst possible things.

I'm so glad we've got a few places to come to meet with like-minded friends and feel at home. :)

Tammy 8i8
If we don't promote knowledge awareness in our children, who will carry on the quest after we're gone?

You don't have to have a sense of humor but it sure helps. :)

Tammy 8i8
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Postby silkie » Thu Jul 20, 2006 11:30 am

Hi Tammy


But if were all honest we can all be guilty of insensitivity

how many times the simple comment like" look at her hair what does she look like ?" or mutton dressed as lamb , you sit down for a coffee sit quietly and just listen to what is going on around you
so many comments "if she had a brain she would be dangerous"

does she really think that colour suits her"
Even nicknames can be unpleasant

We don't mean to be cruel but we often are without realising it

fat thin tall short cross eyed red hair even.

life is cruel many many times. I think learnig to ignore people
that are just in the same space as you for a moment in time is much more practical than expecting people to stop being funny at other peoples exspence

life would be beautiful in a perfect world with perfect people

until that happens the important people in your life are those you love and love you everyone else is like fallen leaves caught in the wind
there one minute gone the next , not to be seen again
they are unimportant

love Silksxxxxx
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Postby Lady8i8 » Thu Jul 20, 2006 12:09 pm

Very well versed. I couldn't agree more!

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Postby Daisy » Wed Feb 14, 2007 10:37 am

I've explained LE to my kids, and to the girl in my Girl Scout troops. Once they know that the garbage men in my legs can't climb my long legs - and it's not catching - they're fine.

I'm always amazed at the moms who think I'm fashion-impaired, or I wear support hose because my legs don't tan or something. I've had them ask why I wear them when it's hot. I usually think of this as an awkward opening, and an opportunity for me to explain about my LE.

I once approached a woman at the grocery store - it was right after my first MLD treatments and I was all enthused - she had horribly swollen legs and the rest of her body was normal. I explained that my legs had looked like that and asked if she'd found a diagnosis. She nearly cried and said the doctors couldnt' explain it. I told her about LE and gave her my doctor's name. She was grateful - wrote it all down, thanked me twice more. I'm a little shocked at my audacity in hindsite - I just console myself that perhaps she got help. (Perhaps my support hose gave me credibility).
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Postby silkie » Wed Feb 14, 2007 12:47 pm

Hi Daisy

Like you i do try to explain to people about supports and why i wear them

and like you I get frred back from friends like My friend has legs like yours and I told her she went to see herdoctor and shes has lymphedema to I love that someone is no longer struggling with ignorance of this condition for so many of us know the pain of ignorance and what lack of self esteem can do.

This week i have found my self explaining about primary lymphedema
no to someone looking strangly at my supports but because of another medical condition professional in the medical world.

People that know what lymphedema is and what it does to the human body. But didnt realise you didnt need cancer or surgery or some worm in another country to start it off.

Ignorance of lymphedema in the day to day world is something i can understand for if it does not affect someone close to you then you probably will not know or understand but in this year of 2007 that
proffesionals in the medical proffesion arestill not taught about this
genetic debilitating condition is a sin and Why in heavens name
there are not HUGE CAMPAINS AS lymph in the third world and lymph with breast cancer and lympg because of bites and infections how can people be born with this genetic fault and doctors still be ignorant of the fact is beyond my comprehenion

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