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Why Debbie would like to change stigma around epilepsy

Created:

16 November 2018

Debbie Jackson is currently feeling positive about her epilepsy. She is a personal assistant at a media company in Canary Wharf and feels supported by her boss and colleagues. People have been very good in understanding her condition when she has had a few seizures at work, but this has not always been the case.

Debbie says that in a previous job, her boss didn't understand about her epilepsy and made her feel "uneasy" when she told them. Due to this, she left her job soon after as she felt it was "discriminatory" and didn't want to put up with the lack of understanding.

Debbie has found that not everyone is helpful or understanding with epilepsy in public. Once when she was in a supermarket cafe with her mother, she had a seizure. When she woke up on the floor, a couple sitting behind her made a joke and said she must have been drunk".

Despite this, strangers have been kind to her when she has had a seizure in public. While she was on her lunch break recently, she had a seizure. When she woke up, the people surrounding her were very helpful and made sure she was ok to leave until a kind colleague collected her.

About her epilepsy:

Debbie is 44 years old and has had epilepsy for 27 years. It began when she was 17 years old after a brain haemorrhage when she was doing her GCSE examinations.

Debbie has had all types of seizures, from focal seizures to focal impaired awareness seizures to tonic-clonic seizures. She currently has around eight seizures a month. Debbie admits that her epilepsy wasn't as bad when she was younger, as it was controlled. However, it has become worse as she has grown older due to a change of medication a few times in her '20s and '30s and the stress through the passing of her father.

Debbie is currently taking carbamazepine  after recently switching from oxcarbazepine. She says that its "trial and error" with her medication but she hopes that carbamazepine will work better for her.

Before Debbie was recently moved onto her new medication, she discussed medicinal cannabis with her consultant, but unfortunately it wasn't something that was right for her and her type of epilepsy. She was disappointed as she was initially excited about it after hearing that it was available and that it could potentially control her seizures. However, due to the very deep scar she has in her brain from the AVM, she thinks she will have seizures for the rest of her life.

She has injured herself a few times during her seizures as she has cracked her ribs and has woken up with bruises through falling on the floor. To prevent her from biting her tongue if she has a night seizure, she wears a mouth guard.

Stigma around epilepsy:

Debbie feels that there can be a stigma around epilepsy, as a lot of people don't understand it, so through this lack of knowledge people can be ignorant. She would love to help others learn how to live with their epilepsy and to share their experiences. In the past, she has met people who don't work due to epilepsy and has wanted to help them.

Being realistic:

Debbie's epilepsy does have an impact on her life, but she tries her hardest to work full time and is very independent. At the moment, she describes her life as being in a good place.

She is realistic about her epilepsy and hopes in the future that she can get her seizures from eight a month down to two. Despite having epilepsy for almost 30 years, Debbie hasn't let it beat her and has stayed positive, "one day I will beat it".