I was diagnosed with epilepsy out of the blue at the age of 21 during my final year at university.
It changed my life dramatically over night and seizures continue to interrupt my life regularly.
But it hasn’t stopped me from always seeking new challenges including further studies.
There are some things I can no longer do that can make everyday life complicated at times.
Epilepsy has prompted many changes but learning to adapt and keeping focused on my ambitions helps me to continue moving forward.
Here’s 15 things you only know if you have epilepsy.
1. We don’t all drop to the floor and shake
There are over 40 different types of seizure.
A person with epilepsy may experience one or multiple types thanks to the condition.
2. Dignity ceases to exist
Anyone could end up seeing anything, at any time.
Seizures can occur in any situation.
Also, you’d be surprised how many ways there are to administer emergency medicine.
3. Someone knows exactly where you are at all times
Think you’re going on a secret date? 10 people know.
4. Your phone connects to hospital wifi automatically
Whether through routine appointments or emergency stays you will be visiting hospital multiple times a year, a month, a week.
5. We’re not ‘epileptic’
We are people with epilepsy and, while we’re on the subject of terminology, we don’t have ‘fits’, we have seizures.
6. You will receive funny looks
When someone gives you a strange look it becomes habit to automatically assume you had some sort of smaller seizure.
Where consciousness is impaired, the person experiencing a focal seizure may be totally unaware they have had one. Funny looks sometimes offer a clue.
7. Everything in life suddenly becomes a health hazard
Childproofing and seizure proofing are one and the same. Solitary, relaxing bubble baths that you dream about all day are simply out of the question.
8. We’re not all sensitive to flashing lights
Yes, some seizures can be triggered by strobe frequency in lighting, however only a small percentage of people with epilepsy (about 3%) are photosensitive.
9. We’re not all born with it
Epilepsy can affect anyone at any time in their lives. There are many different causes but for most people who have seizures a cause cannot be found.
10. No, we cannot swallow our tongues
It is impossible to swallow your tongue so unless you want your fingers bitten off, don’t try putting anything in anyone’s mouths during a seizure.
11. We still live life to the full
Jobs, responsibilities, education and family amongst everything else is possible despite experiencing seizures.
Different severities of epilepsy may need different adaptations but you can do it.
12. Looking like you’ve been in a punch-up is normal
Seizures, especially when they involve a loss in consciousness, can involve injuries.
People will eventually stop being surprised when you turn up with various injuries and just carry on like nothing’s happened.
13. Epilepsy is far from rare
In the UK alone there are more than 600,000 people living with epilepsy.
While there is no immediate cure, in some (but by no means all) seizures can be managed with medication, surgery or the Ketogenic diet.
14. Becoming the expert patient
You start to believe that you have some sort of medical degree when you’re asked to explain your condition.
15. ‘But you don’t look like you have epilepsy…’
Seriously, what is a person with epilepsy supposed to look like?