Epilepsy and Words…

Busy busy week, not had much time to write!

There’s been a lot of talk lately as to how epilepsy should be described. Is it a condition, a disease, a disorder or something else? The International League Against Epilepsy, this month, classified epilepsy as a disease. The new clinical definition states that in medical terms epilepsy is a disease. It chose that term because of the range of health problems it covers and the implications of a long-term presence. ILAE didn’t think describing epilepsy as a disorder quite covers the seriousness of epilepsy. Well, it’s caused a bit of controversy and I, obviously, have an opinion about it too.

Disease means, according to my kindle:

“A disorder of structure or function in a human, animal or plant, especially one that produces specific symptoms or that affects a specific location and is not simply a direct result of physical injury”

I’ve never felt the need to check disease in a dictionary before because I thought I knew what it meant. I always always always associated the word “disease” with an illness that you could catch. So, I’ve never described my epilepsy as a disease, because you can not catch epilepsy. Having read the description, I now understand why the ILAE would describe epilepsy as such and am also slightly humbled that I don’t know what I think I know about an everyday word. A lesson to be learned there. So my initial bristling at being described as having a disease has subsided, but I doubt I’ll ever be able to call my epilepsy such. I don’t like “disorder” either. To me, that makes me sound dysfunctional and I may well be that in certain aspects of my life…I’ll get to that later, but I don’t think of my epilepsy as a dysfunction. To me, “condition” is the way I describe it. It’s not an illness, although it produces effects that are illness-like….headaches, extreme fatigue, confusion etc.

I suppose if I’ve given disease the kindle treatment, I should do the same for condition.

“The state of something, esp. with regard to its appearance, quality or working order….a person’s or animal’s state of health or physical condition”

Bloomin’ heck, I don’t really like that either now I’ve seen it!

So, what about “disorder”….:

“A state of confusion….a disruption if normal physical or mental functions; a disease or abnormal condition”

Well, that seems a bit more palatable to me. Isn’t it all just splitting hairs though? I mean women have colds, men have flu type thing? It’s all the same but different groups of people describe it differently and one definition makes it appear worse than it is…does it add weight to my argument that me stating I am epileptic is just stating a fact and not that it means I’m defining myself?

My trusty kindle describes epilepsy as a “disorder”. But this all got me thinking again about history. No kindles BC! No dictionaries either really. Just poets, philosophers, physicians, warriors, slaves….So, I’ve been doing a little bit of research into epilepsy and how it was viewed in antiquity and the middle ages.

Lucretius was a Roman poet and philosopher, the following poem is attributed to him and is about his observations of those with the falling sickness (not entirely sure it actually is a poem, but has a poetic feel to it)…:

And, moreover,
Often will someone in a sudden fit
As if by stroke of lightning, tumble down
Before our eyes, and sputter foam, and grunt,
Blither, and twist about with sinews taut,
Gasp up in starts, and weary out his limbs
With tossing around. No marvel, since distract
Through frame by violence of disease…

Confounds, he foams, as if to vomit soul,
As on the salt sea boil the billows round
Under the master might if winds. And now
A groan’s forced out, because his limbs are griped,
But, in the main, because the seeds of voice
Are driven forth and carried in a mass
Outward as by mouth, where they are wont to go,
And have a builded highway. He becomes
Mere fool, since energy of mind and soul
Confounded is, and, as I’ve shown, to-riven,
Asunder thrown, and torn to pieces all
By that same venom. But, again, where cause
Of that disease has faced about, and back
Retreats sharp poison of corrupted frame
Into its shadowy lairs, the man at first
Arises reeling, and gradually comes back
To all his senses and recovers soul.

It sort of describes pretty well what happens and proves that these episodes have been documented for many a century. They didn’t seem to have a definitive word describing epilepsy but there have been many “cures” and “treatments” well before drugs came on the scene!

In the 4th century, Diocles used blood-letting as a treatment. He also prescribed drinking vinegar and sneezing before going to bed! Yes, sneezing! I’ve made the wild assumption that sneezing would purge the body of phlegm and of course an excess of phlegm is not a good thing. Lovely. Praxagoras of Cos, from around the same time as Diocles was apparently a bit of a comedian. He shaved the epileptics head and applied a poultice of vinegar….and he also recommended the holding of one’s breath. My favourite of Praxagoras’ cures however, involved compressing the afflicted parts of the body with various substances, such as the genitals of a seal! Yes, a seal! Parts of the body were also burned and incised. Sounds like a bundle of laughs. I think I’ll take my chances with today’s pharmacology, thank you!

In the early Middle Ages, the “falling sickness” was also known as the “falling evil”. Latin texts from the 7th century say that people called epilepsy “demon” and “lunacy”. Isidorus, the Bishop of Seville lived in the 7th century and he claimed epileptics were often called “lunaticus”. Time moves on and us epileptics are associated with having “ecstasies, raptures and prophetic trances” and were hence thought to be possessed by a supernatural being. The centuries haven’t really been overly kind to the epileptic in terms of description and cure it would seem. It seems, to me anyway, that while in antiquity the disorder was recognised as being a disease, the treatment however wild and fanciful was actually hoped to be a cure; as time moved through the Middle Ages it seemed that epilepsy was no longer viewed as a disorder but as a sign that the afflicted was either a demon in disguise or a lunatic suffering from severe mental issues.

It’s the words that are the crux of the issue. The “falling sickness” is actually a pretty accurate description of what happens and does not suggest a failing of mental faculties. The “falling evil” – different matter altogether. Centuries later and it’s the same thing. There is less attachment in the modern world to an epileptic being some kind of demonically possessed psycho, but the argument is about the perception of what it actually means to have epilepsy.

As an extra thought to all of this, maybe we should all be more mindful of what we say to and about each other. I’ve tried to make light of the subject, but it is actually important. I don’t want to be described as a demonic lunatic because I have epilepsy. If you think I’ve done something that warrants me being described as such, then I’ll guarantee you that it had nothing to do with me having epilepsy.

As a further wee note, I’d like to thank Owsei Temkin for the enlightening text – “The Falling Sickness”.

One thought on “Epilepsy and Words…

  1. Pingback: Epilepsy and ??????? | My Musings and My Epilepsy - The Great Shake

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