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 Ivy was small, withdrawn, pale and unkempt, her hair a mop of untended curls.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.

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