Hepatitis C: I Learnt To Speak Scientese (and so can you)

“I don’t know what you mean by ’glory,’ ” Alice said.
Humpty Dumpty smiled contemptuously. “Of course you don’t--till I tell you. I meant ’there’s a nice knock-down argument for you!’ ”
“But ’glory’ doesn’t mean ’a nice knock-down argument’,” Alice objected.
"When I use a word,“ Humpty Dumpty said, in rather a scornful tone, ”it means just what I choose it to mean--neither more nor less."
“The question is,” said Alice, "whether you can make words mean so many different things."
“The question is,” said Humpty Dumpty, “which is to be master--that’s all.”

Through The Looking Glass
- Lewis Carroll

There are so many things you don’t know about your own health until you strike the jackpot of a chronic, degenerative illness like Hepatitis C. There are so many strange words and numbers flying round you wonder if it will ever make sense. You see people making free and loose with conversations like:

“Oh yeah, my last tests showed my HVC RNA ...”
“Qualitative or quantitative”
“Qualitative”
“Yeah right, go on ...”
“So as I was saying we tweaked the RBV as a result of the mitochondrial parietal pharmacological virological... blah blah blah blah.”




They may as well have been speaking Klingon.





I would like to offer, for your amusement, The Things I Used To Think Before I Too Learnt To Speak In Scientese.

Platelet: a small serving plate for appetisers

ALT: a key on your computer you press when things go bad

Taq Man: A man whose job it is to work with tax
 
Assay: Pig latin for - well you know ;)

Bilirubin: A small town on the north coast of NSW (Yes, I was confusing it with Billinudgel)

AFP: Australian Federal Police (yes, again I now know it’s alpha fetoprotein, although it IS also Australian Federal Police )

Ribavirin: a cute little vitamin (yep, riboflavin. I remember looking at one of those evil blue pills and thinking "They put this stuff in BREAKFAST CEREAL? Why, for the love of god! WHY!)

Thrombocytopenia: One of those words I’ll never be able to pronounce. Or spell.

Viral Load: I used to wonder if they counted it by hand:
“Three million, six hundred and seventy five thousand, four hundred and thirty four ... three million, six hundred and seventy five thousand, four hundred and thirty five ... three million, six hundred and seventy five thousand, four hundred and thirty six ...” *knock at the door*
“DAMMIT! One, two, three, four ...”
 
Hepatologist: someone who studies snakes for a living

There were so many more. Facts, figures, numbers, ranges, loads ... and I despaired of ever understanding any of it.

Let me tell you what I discovered.

I discovered that people are generally willing to discuss information and  share opinions. The forums are full of people who know their stuff. Nurse Specialists (or as we call the in Australia, Clinical Nurse Consultants) are often an absolute treasure trove of information and they have the time to talk to you. People want to help. They don’t care where you are on this journey, they’ll help you learn more. 

I learnt it’s good to take some responsibility for your own health. It’s the most important thing you have in your life, because without it you have nothing.The more you know as an informed consumer, the better off you’ll be. You’ll make better choices too.

I found out you pick this stuff up really quickly, because it is so important. I can’t believe I can now run off many normal laboratory values for so many things, but I can because I need and use that information all the time.

Sometimes I forget I’m talking to normal, non-HVC affected people and start rattling off numbers and ranges and counts. I can see their eyes glaze over and they ask me to slow down and speak in English.

And that’s when I know.

I’m so proud.

I now speak Scientese (and so can you!).

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