My seizures only happen at night, but they affect every part of my waking life. (File photo)

Hear the word ‘epilepsy’ and most people think of someone falling down and convulsing.

But in reality, epilepsy comes in forms, and the majority of the time it's a hidden illness.

I have uncontrolled tonic-clonic seizures (grand mal in the old terminology). Some years ago they went nocturnal so I only have them when I'm asleep, meaning it's now a very invisible condition.

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People who don’t know me well won’t see the seizures. They also won’t see how they affect me for several days afterwards.

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For the first day I’m housebound: off-balance, disorientated and asleep a lot.

When I do eventually venture out, my brain still can’t process things very well and I'm quite spaced out.

The closest thing I can compare it to is being on a strong painkiller like codeine. I have awful trouble making decisions: don't ask if I’d like a tea or coffee, I'll have a meltdown trying to decide. It's very scary.

Supermarkets are a nightmare; I can’t follow basic instructions from people or machines and there have been some terrible scenes trying to use the supermarket self-checkouts. Often I say I have concussion to explain my behaviour to strangers, it's much easier. I look perfectly fine, but I'm not.

Even after the spaced out feeling has gone and I think I'm OK I find myself doing stupid things like microwaving a tub of ice cream or putting coffee instead of sugar in my cup of tea.

Some people also get build-ups to seizures known as ‘prodromes’ (as opposed to 'auras’ which are an imminent warning). They can go on for hours or days, and affect mood and behaviour.

When I haven't had a seizure for about 10 days I start climbing the walls and getting agitated, and I can get pretty moody. It’s like a pressure cooker - I don’t feel better until the seizure happens.

Often people who don't know me well are on the receiving end of my pre-seizure behaviour. Even if I know what’s happening, I feel too embarrassed to explain it to strangers.

Then of course there's the medication. The side effects can be worse than the seizures, especially the sedative effects. Some side effects are noticeable but most aren't, and they can be debilitating. When I was able to work part-time it ended up being the drugs that cost me the jobs, not the seizures.

Many people with epilepsy are also badly injured as a direct result of seizures. Obviously some injuries are outwardly noticeable, but many aren't: the bitten tongues, dental damage, bruises, torn muscles, tendon and joint injuries, burns. Hundreds of seizures over the years have left me with permanent injuries and chronic pain - disabilities in their own right, and also invisible.

Unless you know someone well, chances are you won’t know that they have epilepsy. And sadly, many of us have to keep it that way.

I’m writing this anonymously because of the precarious state of my accommodation. The stigma of epilepsy is still so strong that I cannot take the risk of my landlord finding out about it.