Maeve has had epilepsy since she was very young. The medication that Maeve takes has a accumulate effect, leaving her exhausted by the end of the week. Maeve says she is very conscious that she needs to maintain a balance between work and her health.
© Disability Narratives
at the time of the interview – 2016
Maeve is a Junior Research Fellow at a college. Ethnic Background/Nationality:
at the time of the interview - 2016
Maeve has been a junior research fellowship in political theory at a college since January 2016. Although she works with people in the politics department, she is based at the college.
Maeve had her first seizure when she was a child and, apart from a four year gap in her early teens, has had an average of one tonic clonic seizure a year. Around five years ago Maeve had a particularly bad seizure resulting in a head injury that meant she had to take an eight month break during her PhD. At that time she started taking medication, but has found that it has side effects. In particular, Maeve said that her medication can leave her feeling fatigued and fuzzy headed. These effects can accumulate as she goes through the week leaving her exhausted by the weekend.
Sleep deprivation is a serious problem for Maeve as it can be a trigger for her epilepsy. There are several things Maeve does to manage her fatigue. Her current fellowship means that she can be fairly flexible with her hours. Maeve also said that she has had to change her lifestyle including: making sure she exercises; getting good quality sleep; and limiting the amount of work she does, such as not working evenings or weekends.
Epilepsy is completely different for every individual that has it. And that's something that's very difficult to get across to people.
Maeve does not mind telling people that she has epilepsy, as she wants people to know what is happening (and what to do [see NHS Choices advice]) should she have a seizure. However, telling people is not always easy as she occasionally encounters stigmatised attitudes, myths, or partial understandings of what epilepsy is (and how it affects people). Maeve said she tries to get people to understand that epilepsy affects people differently, to the extent that people will have different triggers, number of, and types of seizure.
One of the struggles that Maeve has is that her epilepsy is an unseen disability. Having epilepsy affects Maeve's life every day from not being able to drive (so is reliant on public transport) to the lifestyle changes she has to make to avoid a seizure. In particular, managing her workload means that she does not fulfil the implicit expectation that researchers and academics should work late or over weekends. Maeve is worried that this academic culture might have implications for her future career.