Comments on: The Invisibility Clause http://www.5minutesforspecialneeds.com/547/the-invisibility-clause/ Support. Insight. Inspiration Sat, 20 Mar 2010 02:35:08 -0400 hourly 1 By: Jude http://www.5minutesforspecialneeds.com/547/the-invisibility-clause/#comment-45495 Jude Fri, 23 Jan 2009 00:50:04 +0000 http://www.5minutesforspecialneeds.com/?p=547#comment-45495 Wow your post really touched me. I too was born with an immune deficiency (mainly IGa & IGG) & I COMPLETELY understand what you're saying & feel so much for you. I am now 39 & haven't been as sick as your precious girl so I can only imagine how much more magnified it is for you all. I know people can be so so insensitive & think they're so knowledgeable even when its ignorance they suffer from. I'll keep reading your posts with great interest, & wish the absolute best for Ivy and all of you. God Bless!! Wow your post really touched me. I too was born with an immune deficiency (mainly IGa & IGG) & I COMPLETELY understand what you're saying & feel so much for you. I am now 39 & haven't been as sick as your precious girl so I can only imagine how much more magnified it is for you all. I know people can be so so insensitive & think they're so knowledgeable even when its ignorance they suffer from. I'll keep reading your posts with great interest, & wish the absolute best for Ivy and all of you. God Bless!!

]]> By: Babyamore (Trish) http://www.5minutesforspecialneeds.com/547/the-invisibility-clause/#comment-7558 Babyamore (Trish) Wed, 12 Nov 2008 11:34:24 +0000 http://www.5minutesforspecialneeds.com/?p=547#comment-7558 I wish I could reach through now and give you a hug ...you explained it so well.Even I don't understand how hard it must be for you. I wish I could reach through now and give you a hug …you explained it so well.Even I don't understand how hard it must be for you.

]]> By: Mary http://www.5minutesforspecialneeds.com/547/the-invisibility-clause/#comment-7049 Mary Sun, 09 Nov 2008 20:30:57 +0000 http://www.5minutesforspecialneeds.com/?p=547#comment-7049 Great post, Tiff. You express everything in a way that is gentle but pointed. This is an issue that has almost universal relevance for everyone at some time. I think Ann's comment is very important. People feel that they must come up with something upbeat to say. In our society, we don't have space for people to have a mediocre day; we don't allow ourselves to simply stand by someone who has had a very bad experience. Thank you for all you've said. Great post, Tiff. You express everything in a way that is gentle but pointed. This is an issue that has almost universal relevance for everyone at some time.
I think Ann's comment is very important. People feel that they must come up with something upbeat to say. In our society, we don't have space for people to have a mediocre day; we don't allow ourselves to simply stand by someone who has had a very bad experience.
Thank you for all you've said.

]]> By: Mindy http://www.5minutesforspecialneeds.com/547/the-invisibility-clause/#comment-6661 Mindy Fri, 07 Nov 2008 13:23:13 +0000 http://www.5minutesforspecialneeds.com/?p=547#comment-6661 I could have wrote your entry...it is refreshing to hear someone on the same wave length. My son (now 4 1/2) is medically fragile, sees 15 different practitioners, is on oxygen and a feeding tube and I am constantly told how good he looks. Last Monday we had several appointments and I unwillingly boarded the emotional roller coaster of multiple opinions (from he is in really bad shape, sorry Mom but his heart and lungs are really struggling, transplant yes/no not a candidate, sorry we don't know why he stops breathing though it must be scary for you to wow he looks great! From talking to the other drs I expected him to be on death's door (yes this was a comment from a specialist). I have decided that the validation I need will not come from the medical establishment who are confused by my son so I need to stop looking for it there and move forward remembering I am his best advocate and I know him best. I find it difficult too that other conditions are exalted over my son's trials. Just because there is no unifying diagnosis doesn't mean he doesn't deserve a medal for what he goes through. It is difficult to express so thank you for putting a pen to it. I think society tries to label us and our kids when it isn't that simple. You are miles ahead of the rest in that you have expressed your frustrations and hopefully found some support and validation in doing so. Ivy has a great Mom who truly understands her and will continue to advocate for her unique needs. Thank you for your article. I could have wrote your entry…it is refreshing to hear someone on the same wave length. My son (now 4 1/2) is medically fragile, sees 15 different practitioners, is on oxygen and a feeding tube and I am constantly told how good he looks.

Last Monday we had several appointments and I unwillingly boarded the emotional roller coaster of multiple opinions (from he is in really bad shape, sorry Mom but his heart and lungs are really struggling, transplant yes/no not a candidate, sorry we don't know why he stops breathing though it must be scary for you to wow he looks great! From talking to the other drs I expected him to be on death's door (yes this was a comment from a specialist). I have decided that the validation I need will not come from the medical establishment who are confused by my son so I need to stop looking for it there and move forward remembering I am his best advocate and I know him best.

I find it difficult too that other conditions are exalted over my son's trials. Just because there is no unifying diagnosis doesn't mean he doesn't deserve a medal for what he goes through. It is difficult to express so thank you for putting a pen to it. I think society tries to label us and our kids when it isn't that simple.

You are miles ahead of the rest in that you have expressed your frustrations and hopefully found some support and validation in doing so. Ivy has a great Mom who truly understands her and will continue to advocate for her unique needs.

Thank you for your article.

]]> By: Trish http://www.5minutesforspecialneeds.com/547/the-invisibility-clause/#comment-6656 Trish Fri, 07 Nov 2008 13:04:39 +0000 http://www.5minutesforspecialneeds.com/?p=547#comment-6656 It is the hardest for me when it is family. I don't feel it's complaining to share with those close to me when things are difficult or what challenges we are facing, but I often hear the comment (which sounds like a reprimand to me), "Oh, but he's doing so well!" AAARRRGGGHHH!!!!! It is the hardest for me when it is family. I don't feel it's complaining to share with those close to me when things are difficult or what challenges we are facing, but I often hear the comment (which sounds like a reprimand to me), "Oh, but he's doing so well!"

AAARRRGGGHHH!!!!!

]]> By: Ann http://www.5minutesforspecialneeds.com/547/the-invisibility-clause/#comment-6590 Ann Fri, 07 Nov 2008 05:32:08 +0000 http://www.5minutesforspecialneeds.com/?p=547#comment-6590 Tiff, let me reach across the internet, fold you in my arms and give you a big hug. It's awful what you and Ivy are going through together. It's ok to cry, and to tell me your week has been horrid. Let me offer my shoulder to cry on. And a towel for when you're done. I've suffered some very galling comments after my daughter's death, from people I know (reasonably) well. I believe these comments (at least some of them) are because the person believes they HAVE to come up with something upbeat and happy to say. Which is incredibly frustrating because illness and death are just not upbeat and happy. Other people have no idea what to say, and are making it up on the fly. I'm trying to educate these two groups to just ask how I'm doing, and whether the answer of the moment is great, ok, or awful, to just accept the answer with an "OK, would you like a hug?" Others don't know, and just don't care to understand. I'm learning to just smile and say thank you, and move on. You're a great mom and a wonderful advocate for Ivy. You're doing your best for her, for yourself, for all your family. Your best doesn't have to be superlative every single second. I have had to acknowledge that sometimes my 'best' was crawling in bed, pulling the duvet over my head and crying; then getting up, washing my face and carrying on. If there's anything I can help you with, over the net, or even by post, let me know, and I'll do what I can. {{{(((GREAT BIG HUGS)))}}} Tiff, let me reach across the internet, fold you in my arms and give you a big hug.

It's awful what you and Ivy are going through together. It's ok to cry, and to tell me your week has been horrid. Let me offer my shoulder to cry on. And a towel for when you're done.

I've suffered some very galling comments after my daughter's death, from people I know (reasonably) well. I believe these comments (at least some of them) are because the person believes they HAVE to come up with something upbeat and happy to say. Which is incredibly frustrating because illness and death are just not upbeat and happy. Other people have no idea what to say, and are making it up on the fly. I'm trying to educate these two groups to just ask how I'm doing, and whether the answer of the moment is great, ok, or awful, to just accept the answer with an "OK, would you like a hug?"

Others don't know, and just don't care to understand. I'm learning to just smile and say thank you, and move on.

You're a great mom and a wonderful advocate for Ivy. You're doing your best for her, for yourself, for all your family. Your best doesn't have to be superlative every single second. I have had to acknowledge that sometimes my 'best' was crawling in bed, pulling the duvet over my head and crying; then getting up, washing my face and carrying on.

If there's anything I can help you with, over the net, or even by post, let me know, and I'll do what I can.

{{{(((GREAT BIG HUGS)))}}}

]]> By: WG http://www.5minutesforspecialneeds.com/547/the-invisibility-clause/#comment-6571 WG Fri, 07 Nov 2008 03:23:42 +0000 http://www.5minutesforspecialneeds.com/?p=547#comment-6571 Yeah, I've written about how it feels when you realize that no one really wants to hear that it really sucks. This is a great post. Yeah, I've written about how it feels when you realize that no one really wants to hear that it really sucks. This is a great post.

]]> By: Beth http://www.5minutesforspecialneeds.com/547/the-invisibility-clause/#comment-6527 Beth Fri, 07 Nov 2008 01:42:22 +0000 http://www.5minutesforspecialneeds.com/?p=547#comment-6527 I can relate. My daughter was premature too, and even though she has a global developmental delay, people say things like "she gave us quite a scare" and "look how well she is doing" even though I know it isn't true. I think people just don't know what to say. I can't figure out why else they would say it. To me, it comes across as patronizing, trite and dismissive. I do my best to act with grace and then my husband and I commiserate at how dumb people can be sometimes. I shouldn't say 'dumb', really it's just ignorance. Because certain syndromes (Down's, for example) or illnesses, such as cancer, are so well understood by the public, I think it is easier for them to raise money. For people like you, or for me where my daughter has no diagnosis, it is tough. To quote one of the contributors to this blog, you may be unique but you're not alone. www.bethsfavouritethings.blogspot.com I can relate. My daughter was premature too, and even though she has a global developmental delay, people say things like "she gave us quite a scare" and "look how well she is doing" even though I know it isn't true. I think people just don't know what to say. I can't figure out why else they would say it. To me, it comes across as patronizing, trite and dismissive. I do my best to act with grace and then my husband and I commiserate at how dumb people can be sometimes. I shouldn't say 'dumb', really it's just ignorance.
Because certain syndromes (Down's, for example) or illnesses, such as cancer, are so well understood by the public, I think it is easier for them to raise money. For people like you, or for me where my daughter has no diagnosis, it is tough.
To quote one of the contributors to this blog, you may be unique but you're not alone.

http://www.bethsfavouritethings.blogspot.com

]]> By: Fe http://www.5minutesforspecialneeds.com/547/the-invisibility-clause/#comment-6517 Fe Thu, 06 Nov 2008 22:35:53 +0000 http://www.5minutesforspecialneeds.com/?p=547#comment-6517 What a great way to describe a very real and painful attitude. I do understand that invisibility clause. It effected me too when I had cancer. If I didn't "look" like I was going through chemo, people assumed I was fine. And would, some of the time, not accept any other information from me. I felt that I suffered an enormous amount in silence, because I did not have the strength to say "I may LOOK normal... but I've been told that I may die and I feel physically and emotionally sick and scared and overwhelmed". And of course, the same happens with mental illness. Oh Tiff. Thank you for your ability to articulate the hard stuff. And good luck on your and Ivy's journey. What a great way to describe a very real and painful attitude.

I do understand that invisibility clause. It effected me too when I had cancer. If I didn't "look" like I was going through chemo, people assumed I was fine. And would, some of the time, not accept any other information from me. I felt that I suffered an enormous amount in silence, because I did not have the strength to say "I may LOOK normal… but I've been told that I may die and I feel physically and emotionally sick and scared and overwhelmed".

And of course, the same happens with mental illness.

Oh Tiff. Thank you for your ability to articulate the hard stuff.

And good luck on your and Ivy's journey.

]]> By: Rickismom http://www.5minutesforspecialneeds.com/547/the-invisibility-clause/#comment-6515 Rickismom Thu, 06 Nov 2008 22:12:07 +0000 http://www.5minutesforspecialneeds.com/?p=547#comment-6515 Well, the patronizing "she looks great" happens with ALL disabilities... people are trying (HAHAHA) to make you feel good..... I had a friend with IgG deficiancy... everyone thought she was a hypochondriac (me includded, I am afraid to say) until she was diagnosed as an adult, after her child was diagnosed. Well, the patronizing "she looks great" happens with ALL disabilities… people are trying (HAHAHA) to make you feel good…..

I had a friend with IgG deficiancy… everyone thought she was a hypochondriac (me includded, I am afraid to say) until she was diagnosed as an adult, after her child was diagnosed.

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