The Words in my Notebook

Words – I love words. Words that probe and words that play, words that delve and words that dance. Words that explain, words that explore. I’m not so keen on words that complain and words that hurt, but they do have their uses.

I have notebooks full of words. What writer doesn’t! But some of these words aren’t part of an idea for a story, or a title for an otherwise unwritten poem. They are just words I like. Savannah. Hemisphere. Perfidy (sometimes words sound so much nicer than their meanings). Or words I’ve just discovered, usually from the cryptic crosswords my husband and I do together over breakfast. Derailleur (some doodacky for changing gears on a bicycle) Legerdemain (deception, trickery) – actually, that’s not a new word to me, but I only discovered what it means yesterday.

When my grandson was two, I did it and disgusting were his favourite words. I did it was always uttered in a high-pitched crow of pleasure rippled through with a throaty chuckle and usually accompanied by him clapping his hands together. He said it the way most children say ‘Look at me’ – when he had achieved something that made him proud, like building a complicated tower from his wooden blocks, or walking across the balance-beam at the playground.

Disgusting was high praise, each syllable drawn out and emphasised, distorted by his huge smile, his eyes wide and shining. Disss- gast- iiiing! He’d say it when he saw anything both amazing and awful – like the massive carcass of a whale washed up on the beach.

Now he is eight, and uses disgusting to describe things that are just awful – like turtles in the oceans suffocating on plastic straws humans chuck away, and seahorses swimming around with cotton-buds in their tails. He uses his words to explain to cafe owners why single-use drinking straws are a bad idea.

When his little sister was around 18 months old, her favourite words were brother (him!) and exciting. This was from something I wrote back then:

She saw some silk butterflies in a shop yesterday. Three of them perched on the ends of pencils in a plastic tub on a high shelf. 

“Look Oma, up there. Butterflies.”

“Oh, yes, three butterflies.”

“Pretty butterflies, Oma.”

“Yes, they are pretty. There’s a pink one, and a purple one…”

“And a blue one, Oma. It’s exciting.”

She’s so right. It is exciting – the speed and fluency of her language learning, the ability it gives her to experience and influence her world.

She’s six now. These days she gets more excited by real butterflies – particularly the Monarch butterflies that lay eggs on her swan plants every summer. Her vocabulary is full of words like chrysalis, cocoon, metamorphosing.

If you think about it, learning new words is a kind of metamorphosis. They help us move from one stage of understanding to another.

When my granddaughter was born was around the time I was going through a major language metamorphosis, spreading my wordwings with new medical terms and descriptions. Trigeminal Neuralgia. Glossopharyngeal Neuralgia. Geniculate and Occipital Neuralgia. Trigeminal autonomic cephelalgias. Carbemazepine, Gabapentin. Micro-vascular decompression, balloon rhyzotomy, anaesthesia dolorosa…

These words may all sound like some mysterious, magical spell to you. They did to me, at first. In fact, seven years ago I’d never even heard of most of them, much less tried to speak them. Now they trip off my tongue as lightly as butterflies.

As they are words that belong inside a neurological department or research paper, I shouldn’t be more fluent than some neurologists. But I am. I’ve been dealing with the meaning of some of them for 45 years.

The trouble is, when you have a rare disease, it is difficult to find a doctor who has much knowledge or experience of treating that disease. My neurologist had only come across 18 cases in forty years of practice. And because there were words he knew in relation to trigeminal neuralgia but that didn’t apply to me, like over sixty years old he had trouble diagnosing me properly. I was 46. But I’d been experiencing lancinating, shooting pains in my face intermittently since I was seven.

Unfortunately, during the diagnosis/discovery period, he also misapplied what knowledge he did have of trigeminal neuralgia. His favourite phrase was ‘That’s not trigeminal neuralgia’. But because of other words that applied to me – woman, middle-aged, peri-menopausal – he drew on Freud rather than fact.  He ignored the tests that suggested my face pain was organic, and ignored the test that showed my other symptoms were from another condition that often also causes neuralgias, and ignored the reports from other specialists that confirmed my face pain was neuralgia. Instead, he declared the problem was psychiatric.

One word that has always applied to me is stubborn. Persistent, determined, if you want to make it a compliment. And I knew he was wrong. So I had words with him. The words I used about him in the privacy of my home were a lot ruder than those I used to him, though I’m pretty sure he didn’t relish having words like incompetent directed at him.

In the end, a proper diagnosis took a couple of years, reams and reams of medical readings, a psychiatrist asking why the hell he’d wasted her time sending me to him, a second neurologist who had actually read medical research on trigeminal neuralgia published less than forty years ago, a locum GP who recognised a symptom that had been overlooked, a rheumatologist who followed up a statement like ‘That’s not trigeminal neuralgia’ with statements like ‘So lets find out what it is.’

So ‘not trigeminal neuralgia’ metamorphosed into other words, other conditions. Ehler’s Danlos Syndrome, Sjogren’s Syndrome, hypothyroidism. More new words blossomed from these additional diagnoses. Dislocation. Subluxation. Faulty collagen. Not new in the sense that I had never heard them, but new in that I hadn’t known they applied to me.

One word that cropped up over and over was rare. Trigeminal neuralgia is rare – around 1 person in 10,000. Ehler’s Danlos is rare – 1 person in 5,000 to 20,000, or 1 in 20,000 to 40,000, depending on the type. Sjogren’s is debatably rare – around 1 person in 1600 (generally a rare disease is defined as less than 1 person in 2,000) but it is rare to reach a diagnosis in less than six years. My Sjogren’s symptoms first flared when I was around 29

Rare in a medical context is a word that often has a dual meaning. Not only does it mean something that seldom occurs but also something that is hard to diagnose, and therefore often goes undiagnosed for many years, or forever, meaning that the disease looks rarer than it is. some rare diseases, like trigeminal neuralgia, are just words medical students might have heard mentioned once back in first year at med school.

So I don’t expect doctors, even specialists like neurologists, to have come across cases of particular diseases, and instantly recognise what they see. But I do expect them to use their words better. I do expect them to listen carefully to the words their patients speak and do the necessary research if they don’t recognise a patient’s symptoms. I do expect them to listen to the words their colleagues speak. I do expect them to use words like investigate and research. I’ve realised only some of them do.

I’ve also realised just how well-informed and able to advocate for ourselves we need to be as patients. Rare diseases are complicated. They are difficult to diagnose. They are often slow to be diagnosed – I often wonder if that’s why we are called patients. We need a phenomenal amount of patience.

Some Words Patients Need to Know

Accuracy

be accurate and specific about your symptoms.
General statements too open to misinterpretation.

Believable

saying ‘worst pain in the world’ to describe TN, sounds like an exaggeration.
Root the description in a concrete example e.g. more painful than childbirth

Diary

an accurate and detailed diary of your pain/symptoms is a good record of the progression/pattern of your condition, and you don’t have to rely on memory at appointments.

Facts

your doctor needs to know the facts of how your symptoms manifest.
Being outside hurts is not helpful.
The cold air outside causes stabbing pain attacks in my cheek gives factual information.

Knowledge

don’t assume a specialist knows everything about your particular condition.
If only 1 in 2,000 or 5,000 or 10,000+ has it, how much experience is possible?
Be prepared to need a second opinion.

Questions

always ask if you’re not sure what your doctor means or why they said something, or how to manage your condition and how to take your medication etc.

Research

learn as much as you can about your condition. Get your information from reputable sources – university hospital sites, medical journals etc. Information from other patients with your condition is anecdotal – it can help you get a deeper understanding of how people experience the condition, but your doctor will need research papers.

Support

join support groups. They are a good source of friendship and understanding and shared experiences.

These aren’t all the words you’ll need, but they are a good start.

What words would you add to the notebook?

---