Topic of the discussion
Posted on 23/11/2017 15:42
Have you ever encountered lack of understanding from your friends/colleagues or from strangers?
How do you explain epilepsy to others?
Beginning of the discussion - 23/11/2017Understanding epilepsy https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/understanding-epilepsy-2071
Posted on 23/11/2017 16:43
Most people I have encountered have been supportive and understanding, but not everyone knows about the nature of the condition. I usually describe it as I have an 'over-active brain' or 'the neurons in my head are over-excited'.
For me, the most frustrating part of epilepsy is not the grand mal seizures, but how to tell people about my condition so they don't freak out. I usually tell the people with whom I live with what to do if they find me unconscious. The most important being making sure that I don't hurt myself in my spasms. But the sheer unpredictability of these seizures mean I can't always find help when needed, and if people are around, they tend to panic and call an ambulance which does not help with recovery.
In everyday scenarios, I find petit mal seizures (in the form of arm spasms) quite annoying as it interferes with my work. Also, particular activities e.g. doing statistical analyses, drawing graphs, editing visual and audio files tend to put a lot of stress on the brain and cause my arms to violent shake, sometimes leading to grand mal seizures. These activities are core to my work and I cannot avoid doing them. People don't always understand why I have to stop doing these things and take regular breaks, especially when circumstances don't allow them. Fortunately, admin at the university level have been very understanding if extensions are needed for me to complete my work. However, this does not stop it from becoming a nuisance.
Posted on 18/12/2018 12:24
@Qingyuan Thank you for sharing your story :)
I think you could find this article we recently published interesting. It is about your loved ones understanding your condition, you can find it by clicking here.
I hope it helps!
Posted on 13/05/2020 21:36
I think most of the people I've met too are pretty understanding and sympathetic as well. But I think strangers or people who know me but haven't been there during a seizure are a bit scared of me during and after as the average person has never witnessed one. I think generally people are a bit shocked when they find out I have epilepsy because in their minds epilepsy is this major debilitating "disability" and they don't picture someone who looks "normal" to have it. I think this is common among "invisible" diseases.
Posted on 15/05/2020 14:36
I've had epilepsy now for 46 years and remember all the bad times during initial diagnosis, not understanding epilepsy in the beginning, no warning signal before a grand mal (tonic clonic) seizure and so many other things.
Bullying and discrimination is so unfair; I went through this at school. Puberty brought on the seizures from a hormonal aspect, but my family was always supportive and my Mum was my 'pillar of strength'. She made me accept it at the age of 17 which makes me more determined to advocate and educate others with epilepsy today.
By being on social media, I now have many online friends who give each and every one of us constant support, even though I've never met them. This is so important and spreading more awareness is vital.
To all my warriors, keep that spirit up and do not give up hope. Together we can find a CURE!