Wednesday, 8 March 2017


Are you OK or how are you going are the hardest questions for a person with a rare condition to answer. I get asked these question dozens of times a week and each time I stumble over my answer. You see they are usually asked because a person is genuinely being nice. Sometimes they are asked because a person is being nosy. And other times, especially in Australia it is just habit.

So how does one answer these questions without offending the genuine and do people really want to know the proper answer anyway? I find myself increasingly answering "good thanks", simply to get the situation over and done with. I find myself realising that people don't need to know and sometimes don't really want to know, so I feel I've saved us both the trouble really.

It really is quite exasperating because this ends up feeling like I have been issued with a gag notice. You must not and can not tell people the truth about how you are going, because in reality they can't possibly understand. Some gave up trying to understand my condition and my daughter's ages ago. They don't understand why we are not fixed, so when they occasionally slip up and ask how we are going, you almost see a look of terror on their face. OH NO, SHE IS GOING TO ANSWER. I think that people don't know what more to say and I get that. The first time she was sick I was 100% supportive but by the twentieth time, I don't know what to say to her.

Of late I have even started the "good thanks" business with family because for some reason I always feel like I am trying to out do their problems. And that is not fair. Everyone's reaction to their situation is relative to their experience. A lump in my body results in a systematic approach to investigation. I do it without blinking. A lump in someone else may elicit pure terror. Although the lump is more likely to be nasty in my case, I zip my lips. Everyone has to feel their own way and their own terror. A friend recently had a melt down because he needed a blood test. Oh LOL.

Maybe I should adopt my uncle's approach. When he came to visit us in Australia from Malta, he seemed completely baffled why Aussies use the phrase " how are you going?". His initially couldn't figure out why people always asked his mode of transport. After laughing my head off we explained it was a way of saying "how are you". Maybe I should just answer " by car" to everything, like he initially did.

A week in the life of someone with CS varies. My daughter and I have what we call "doctors weeks" where we try to make sure we use our time wisely to avoid the 450km trip back to the city. So between us it could look something like this - specialist visit, mri, blood test, endoscopy. I haven't made that up. That was a few weeks ago and its not unusual.

So when you ask if I'm ok this is what I want to say:

I'm worried about that lump.
I'm worried about the ongoing radiation.
I'm scared the nurse who bruises me will do the blood tests.
I'm terrified of more damage to my stomach.
I'm worried about the bills.
I'm anxious at missing work.

But I can't because it makes people uneasy and uncomfortable. I save it for the precious few who can still cope and for the majority I answer "I'm good thanks". It's not fair but its what I've got unless you want the " by car" answer.

Till next


  1. By car! Brilliant! I think I'm going with that one - as soon as I can speak! Hang in there!

    1. All good. One foot in front of the other every day.


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