Who has heard something like: "You're on medication so you're fine!" (or words to that effect)? People don’t tend to say this to those with asthma because despite people with asthma having an inhaler they could still have an asthma attack. People also don’t tend to say it to those who have diabetes and take insulin because they may still get hypoglycaemia. We don’t presume the people with these conditions to be fine at all times or cured, right? We know that these people really must look after themselves and that the conditions can really affect their lives.
The common misconception “medication cures epilepsy” is down to the fact that many people remain ill-educated on the condition.
Overall, anticonvulsants are a positive thing because with the “right” dosage and combination of drugs (of which it can take years to figure out) 52% of people with epilepsy are seizure free.*
Nasty side effects of anticonvulsants can include (but are not limited to):
· Forgetfulness (i.e. memory issues)
· Weight gain
· Liver failure
Lovely stuff eh? This means that many people with epilepsy sacrifice other parts of their health and therefore their quality of life to try and control/partially control their seizures. The effects of the epilepsy drugs alone can be depressing and anxiety-inducing.
I started meds when I was diagnosed with epilepsy at the age of 10 and I noticed the effects overnight. I had to work twice as hard at school to get good results. I would go to sleep on the coach to and from school as I was so exhausted. I fell asleep in class once too and kept forgetting what the teacher had said. I had to write everything down.
My point is that epilepsy is not as simple as it seems. It’s not a black and white, yes or no condition. It’s not cured by popping a few pills. Medication can have nasty and sometimes dangerous side effects.
If I could get rid of my epilepsy I would. My seizures have been infrequent since my brain surgery (!) but they do still occur, and I still must take my medication.
One of the aims of this piece is to help spread the word re epilepsy to employers too. If you know anyone whose employer is not understanding of an employee’s epilepsy, then please get them to contact Epilepsy Action who can provide them with training.
To end things on a cheerful note (!), here are some positive outcomes of my epilepsy:
· I’ve made some great friends and met some inspiring people affected by epilepsy who really take me aback;
· I’ve become soooooo organised (because I was so worried about forgetting things);
· It’s made me value my health. Physically and mentally;
· I’ve been able to effectively contribute to Epilepsy Action and help raise awareness of epilepsy, internationally
Please let me know of any positive things that you feel epilepsy may have brought to you. We need to spread the love. Because Epilepsy Is a B*tch.
Epilepsy Sparks CEO - featured on BBC, HuffPost, Sky News & More.
Does your company require an inspiring speech or some consultancy on epilepsy, mental health, and diversity & inclusion? Contact: firstname.lastname@example.org