Long term health conditions

Lara - Interview 03

Age at interview: 24
Age at diagnosis: 17

Brief outline: Lara was diagnosed with myoclonic juvenile epilepsy when she was 17 years old. She became depressed and lost her confidence after diagnosis but she wasn't offered counselling. Her nurse has provided her with lots of support. Nowadays she jokes about her epilepsy giving it derogatory names and says that it is one way of coping with it. She has no problem in telling others about her epilepsy.

Background: Lara is a full time student nurse and lives in shared accommodation with three other young people. She has just recently moved out of the family home. Ethnic background/nationality' White.

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Lara was diagnosed with myoclonic juvenile epilepsy when she was 17 years old. She says that her diagnosis knocked her confidence and she did not want to tell people she had epilepsy in case they saw her as a 'freak' or a 'weirdo'. In retrospect she thinks that doctors didn't explain her condition to her at all well or provide her with enough information. She said that what was important for her at that time was to know was that she was going to be able to live a normal life. She says that doctors should give the message that epilepsy does not have to stop you from doing anything - providing you take certain precautions like having enough sleep, and making sure you take your medication. 

At 19 Lara decided she wanted to study nursing but first applied to work as a healthcare assistant to get some experience of working with patients. Initially she got positive feedback but after she disclosed that she had epilepsy she was made to wait 6 months before they reached a decision. It was quite a frustrating time because she really thought she would not be able to do what she wanted.

She has a supportive group of friends and one of them has been around on occasions when she had had seizures and knows what to do. Regarding travelling she says that it is important to travel with someone who knows you and knows what to do when you have a seizure and/or are not feeling well. In her experience, epilepsy does not have to prevent you from travelling. She makes sure that she always has enough medication and she listens to what her body is telling her.

Lara has experienced seizures twice when having sex. The first time she was in her teen years and thinks she didn't handle that incident very well and her boyfriend at that time 'freaked out'. More recently she has had another similar incidence but she is more knowledgeable about her epilepsy and was able to talk to, and reassure, her boyfriend that such incidents are very, very uncommon. She says that she has been able to again because her boyfriend now understands and accepts her epilepsy. 

Her mother has been very supportive and more practically and emotionally involved than her father. An aunt on her mother's side of the family also has epilepsy.


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