Long term health conditions

Catherine - Interview 02

Age at interview: 29
Age at diagnosis: 15

Brief outline: For many years Catherine stayed on a treatment that was not successfully controlling her epilepsy. And as a teenager she didn't know much about the different medications available. In her early twenties her new consultant put her on new medication that has improved the overall management of her condition.

Background: After reading Theology at university Catherine went to work for an epilepsy charity and now works as a trainer for a Department of Health funded project. Single. Ethnic background/nationality' White British.

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Catherine was diagnosed with epilepsy at the age of 15. Her father has epilepsy so she grew up knowing about the condition but was shocked to be diagnosed with it. At the time she would have liked to have had more information about epilepsy and more opportunities to ask questions. She didn't know much about the condition until she moved to her current consultant who is an epilepsy specialist, she also learnt more after university when she started working for an epilepsy charity. 

After she was diagnosised the fact that she had to take medication every day made her feel different to other teenagers. Her medication made her put on weight but the medical staff did not warn her about this possible side effect. She said that back then she had low self-esteem, but didn't want to discuss the weight problem with her consultant. She stayed on the same tablets for a number of years but her current consultant changed her medications because it was not working (preventing her seizures). Until then, she did not know that there were different medications and you should ask for the one that controls the epilepsy best. Her new treatment means that she lost the excess weight and has only had one seizure in two years. 

Her family's attitude was for her to do all the activities that other young people her age where doing' school, sport, going to parties, etc. She thinks that although her parents were worried at times they did not prevent her from doing the things she wanted to do.

Her school work was only affected when she had a seizure because she would sleep for the rest of the day, but in between seizures her school work was not generally affected by her condition.

As a teenager she had concerns about issues such as drinking alcohol and sex but was too embarrassed to ask, and unfortunately these issues were not raised by her medical team. Since she was 17 however, at every appointment she has had her doctor raising the issue of family planning and contraception because some of the medications for epilepsy do carry a higher risk for the unborn baby. 

Having seizures in front of people, particularly those of her own age, made her feel very different and embarrassed especially during her adolescent years. In her experience people who know she has epilepsy are very good about it, including her boyfriends. Those who were unkind to her did so in relation to the side-effect of the medication (overweight) rather than about her seizures. Since going to university she has found it easier to talk to friends and family about how she feels.


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