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#25544 - 11/26/09 10:53 AM How do you deal/get passed the comments
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
I'm just wondering how you deal with all the comments people make? Everytime we go to the grocery store, every child will ask their mum, " what is wrong with that baby?" frown Most of the time the mother will quietly tell their child to be quiet but it really gets to me. I don't blame the kids, after all they are curious but it's making me so sad for Brandyn. He doesn't realize what is going on but someday he will frown it breaks my heart.

I dread going out sometimes because it just make me feel so depressed to hear these things..Most adults will ask if he has been burned or give me "tips" on how to deal with eczema. I'm always very polite and explain the condition but it gets so draining after awhile. I don't even know what I'm asking really as I sit here typing. Perhaps I'm just venting a little but sometimes life is so depressing frown thanks for listening!


Edited by brandynsmum (11/26/09 10:54 AM)
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

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#25545 - 11/26/09 12:36 PM Re: How do you deal/get passed the comments [Re: brandynsmum]
EmberSparks Offline
Member

Registered: 03/15/09
Posts: 60
It does get tiresome, doesn't it? Days when I am too tired/busy to answer a million and one questions I hand out an awareness card. FIRST has them available & they are wonderful.

Now that my son is getting older, it is bothering me less. Last week he noticed someone looking at his hands, trying to figure things out. Without the lady saying anything to him, he said "It's called ichthyosis. I have lots of dry skin." It didn't even bother him. I think it is harder before you really can tell what hurts your child. Just try to model exactly how you want your son to handle things. Now I try to involve my son in any questions that are asked. He's a smart kid and it is good practice for when I won't be at his side. Involving him also stops the meaner questions, as does having a card that validates the condition in the eyes of the person who may be concerned about your child's welfare.

Hang in there:) It does get easier (I didn't use to believe that advice given me on this site, but it is true!)

_________________________
3 year old (collodion baby/ARCI)

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#25546 - 11/26/09 08:33 PM Re: How do you deal/get passed the comments [Re: EmberSparks]
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
Oh Morgan, it's so hard somedays isn't it? I'd like to say that I handle comments positively but I'm sure that's not always the case! Most of the time they ask if she has eczema and some days I just say yes because I can't be bothered with the long reply. Other days people get the full blown explanation. Because she's bandaged the question people ask is why do you bandage her? I was in the hairdressers the other day. A lady asked me what was wrong with her skin and I replied she has ichthyosis and she surprised me by telling me she knew what that meant!! Her son had severe eczema and we had a good old banter about different creams etc. When I do explain I feel like I'm educating people and raising awareness of the condition. It doesn't bother me as much as it once did, maybe I've subconsciously learnt to block out the comments I hear. Sometimes all you need is good old moan to people who understand and that's what we're here for.
_________________________
Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

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#25548 - 11/27/09 12:14 AM Re: How do you deal/get passed the comments [Re: Ivy's Mummy]
KimNL Offline
Member

Registered: 07/31/08
Posts: 146
Loc: Holyrood, NL, Canada
It drives me nuts when I try to explain and people pat me on the hand and say "don't worry, she'll grow out of it" after I just finish explaining that it is a genetic condition which is lifelong!
Some days are good - some not but the pleasures that our beautiful kids bring us is more than worth the nosy, ignorant or rude people we have to deal with on occasion.
_________________________
Kim
Mom to Casey born Feb 17/08(?LI/CIE), Sara born Feb 18/06, and Kaitlyn born July 2/03
Casey has been tested positive for a genetic mutation in the ICHTHYIN gene (which is indicative of either LI or CIE)


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#25558 - 11/28/09 04:38 PM Re: How do you deal/get passed the comments [Re: KimNL]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
Yeh we go through that too and it is so hard. I am dreading what its going to be like as she gets older. I try to answer people honeslty but for me the part I hate most is the pity. I don't want people to pity her, she is a beautiful little girl and I know that she is going to live a perfectly normal and healthy life, she just has one thing that makes her a bit different. I guess I am just going to try to teach her that EVERYONE, no matter how beautiful or perfect they may appear to you, have something they don't like about themselves, so our kids are really no different.
_________________________
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

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#25568 - 11/29/09 01:44 AM Re: How do you deal/get passed the comments [Re: MomofPrincesses]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Thank you for your replies, sometimes is just good to vent!

Kati- The pity bothers me too and perhaps that is why I keep thinking this will be such an issue for Brandyn. People are always upset to hear that this is a lifelong condition.

Like Kim, they tell me he'll grow out of it and when I say he won't, it's always "oh dear, poor thing"

Wow Emma on finding someone who has heard of ichthyosis!! That's precisely why there needs to be more awareness. If people had heard of the condition it would make our long explanations easier and less frequent smile

Ember- Im glad to know your little boy isn't bothered by the comments and I think it's wonderful that he can explain the condition in his own way. It gives me hope and I know what you mean about not knowing how our kids will handle it. It's fearing the unknown.

All in all I know I have a strong beautiful little boy and nothing can change that. I guess my biggest fear is that the day MAY come that one of these comments breaks his incredible spirit..
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

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#25572 - 11/29/09 05:35 PM Re: How do you deal/get passed the comments [Re: brandynsmum]
Keith Offline
Member

Registered: 07/29/09
Posts: 48
Loc: Southern California
I wish I could tell you it will end some day but we all know that isn't true. I'm in my 40's now and most people in my town have known me since I was a kid so I don't get many questions at all anymore. I don't mind the questions so much, Like some of you have said I feel like I am educating the public little by little. This Thanksgiving my wife and I drove to Northern California and spent Thanksgiving with her parents, both of whom are elderly and can't get around very easily anymore. While we were there I decided to help them out by running to the store and stocking up on a few things we depleted during the holiday. When I was checking out I handed the cashier my money and she just froze looking at my hands, then tried to take the money without having to actually touch me. I received my change in the same manner. It had been a long time since anyone had acted that way, brought back all kinds of terrible memories from my childhood when I was driving back up the mountain. You can only do so much to prepare your children to deal with this. Unfortunately no matter how used to it you get it only takes a second of ignorance to cause you emotional pain all over again. I'm sorry that we all have to go through this, both parents and children alike, ignorance has no boundaries. It does get easier as you get older but you're never bullet proof.

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#25587 - 12/01/09 12:54 PM Re: How do you deal/get passed the comments [Re: Keith]
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
I get tired of people suggesting a great lotion that "worked wonders" for them. Worse, I have had a number of people say "I must have that too because my elbows are really dry!". Ugh!
I have learned that shorter is better because frankly, you realize part-way through the explanation that they aren't even hearing you anymore. I have condensed it to "it's a hereditary skin condition" and "I am allergic to that lotion".
I don't want to be rude but I also don't want to spend my time explaining things to total strangers. If they take a genuine interest I am happy to talk, but usually, once they realize that there isn't a gory story to go along with my skin they get bored.

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