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The Invisibility Clause
It's an invisible illness, this immune deficiency gig.
There is nothing obvious about the girl to signal that she is different from her twin, her sisters, the kid standing next to her.
Sure, she is a little small and she's sometimes pale but generally she looks just like your run of the mill (almost) three year old.
People who don't know her (or me) well will size her up and tell me she looks great. Sometimes even the people who are closest to us will do the same.
It is what I have come to think of as 'the invisibility clause'.
If you can't see it, it's just not there.
And for some reason, it irks me no end.
I had someone tell me how good she looked the day after our last stint in hospital. The girl almost had chest tubes inserted into her little lungs, her recovery had been painfully slow. It was very stressful.
I was physically and emotionally exhausted. I just wanted someone to hug me, tell me it would be okay, acknowledge how hard the last week had been. Ivy was small, withdrawn, pale and unkempt, her hair a mop of untended curls. To me, she looked a whisper of her usual self but the antibiotics and the week of convalescence in the hospital had brought with it some energy and happiness and yes, she was so much better.
But she was anything but great.
I have heard that throw away statement so many times in the last year.
I wanted to cry.
I have learned to smile and nod instead.
Some people, genuinely think they are helping by remarking on her appearance.
I have learned that a lot of people don't want to hear that your week was terrible and your child is not the best.
It is a difficult concept to understand, I think, this immune deficiency stuff.
And the invisibility clause is easier.
Most people, most doctors, don't know what an IgG deficiency is and many have never heard of Pemphigus.
They say, "Oh, that's no good…what is that, by the way?"
It is not a well known disease, there is nothing tangible that people can relate to.
And because they cannot grasp what is happening to her little body they just pretend it isn't.
Even Ivy's pediatrician balked at the possibility for a long time. Instead he told me it was her prematurity, it was because we had a large family, it was me, being over protective after losing our son. He passed it off as being normal toddler illness for as long as he could just because he did not fully understand what we were going through on a day to day basis. It wasn't until she started having febrile convulsions and the blisters started appearing (that something tangible) that he conceded that we might have a problem.
When we enrolled Ivy in preschool for next year, the teacher asked about her health and we tried to explain…
"Is it cancer?" she asked
No, but it involves ongoing infusions to keep her well. It can make her really sick, if the wrong bug gets into her body, she requires medication to stop her own body imploding on itself…
"Oh just so long as it's not cancer". she dismissed us, as if we were some over protective twits.
Cancer is something that everyone can associate with. It is scary. The big "C".
In Australia there is a lot being done for people with cancer. There are groups and camps and places where people can go to find support for this horrible life threatening condition. At our tertiary hospital almost all of the fund-raising goes to the oncology ward.
This is a wonderful thing, but for us, there is little. We have a "foundation" and there is some support there but I have yet to meet another Mum with a child like Ivy or talk to someone face to face. There are no places I can go and be with others who understand. Instead I lurk on American forums and ingest information that way.
When we go in for the infusions we are put in a sterile room and expected to sit for hours. There is no TV, or PlayStation unit. There are no play therapists who visit with coloring. Luckily the first time we went to day stay I took books and toys because I didn't know what to expect. In the oncology infusion center there are all of those things and much more.
I'm not saying that the children who suffer terribly from cancer don't deserve these things – they do.
These things are small in the grand scheme of things, but they help brighten up childrens' lives, making their challenges more bearable.
I am just using this as an example. My point is that this is something that could and should be done for all children facing a difficult medical diagnosis.
Australians are great supporters of the cause, except when we can't see it.
So, the invisibility clause is a national condition. It doesn't only happen on a personal level.
I would love there to be at least some level of understanding out there in the general (Australian) public. Some support would be even better.
My friends and family are slowly coming around to the idea that Ivy will not get better from this, that this will be a lifelong condition and that it is a real threat to her existence, with long term complications.
Some even know about the clause and are trying to read between the lines.
Filed under Blog, Dealing With Public Perceptions, Tiff by
Comments on The Invisibility Clause »
Spring @ 5:49 pm
Oh sister, do I hear you! My newest child is seriously mentally ill and yup! We get the "Well I can't see it so it must not be there" responses too.
I hope you have somebody in your life who gives you the acknowledgement and validation you need (and deserve), because the truth is that it is hard, it is scary, and it can be very isolating, particularly when people pretend nothing is happening.
I think having a child in the hospital is one of the scariest, most stressful things that can happen.
Gosh, I wish I was there! I'd take you out for coffee and give you a big hug!
(((hugs)))
Rickismom @ 6:12 pm
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.
Fe @ 6:35 pm
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.
Beth @ 9:42 pm
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
WG @ 11:23 pm
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.
Ann @ 1:32 am
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)))}}}
Trish @ 9:04 am
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!!!!!
Mindy @ 9:23 am
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.
Mary @ 4:30 pm
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.
Babyamore (Trish) @ 7:34 am
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.
Jude @ 8:50 pm
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!!