Leading a life as a young adult with epilepsy is challenging and confronting. We spoke to two women about the specific challenges in their lives. Sarah (41), who has focal impaired awareness seizures and Sue (65) with juvenile myoclonic epilepsy, share their stories and their three biggest challenges when they were a young adult.
Employment is never a certainty
“When it comes to employment there's no such thing as certainty.”
Not knowing how you will feel when you wake up in the morning, is very frustrating and it makes employment very uncertain. “While everybody else can easily commit to a job, I don't work” says Sarah, “and when it comes to employment there's no such thing for me as I cannot commit to the certainty of a 9-5.”
Understanding your seizures is important as even though some seizures do happen overnight - ones you are not aware of makes waking up the next day more exhausting. Days are also different, some days you may be feeling fine and ready to take on the world, but the next few days you may be knocked out and not have the energy to even leave your bed.
“I don't work, I cannot commit to a 9-5 job.”
Although law protects workers with epilepsy from being discriminated against at workplaces, it all comes down to understanding the types of seizures you have and how often they happen. Are they seldom? Which times of the day do they happen? How do I feel afterwards? Keeping track of your seizures is very important, it can also help you filter the jobs you might be able to work in.
“It is all-consuming, I just don't know if I have the energy.”
According to the Epilepsy Foundation, “over 90% of women with epilepsy who become pregnant have healthy babies.” Yet many women are worried about the health of the baby and how stressful the journey can be. This leaves a number of women to not even consider having a baby. A study published by the Norwegian journal Tidsskriftet showed that the drug concentration usually declines when a woman is pregnant. Therefore being pregnant can reduce the effectiveness of medication, with the possible requirement of the person with epilepsy to up their medication.
“I have made the conscious choice not to have kids because of the condition. It is all-consuming, I just don't know if I have the energy.” Sarah expresses.
The types of seizures that one experiences during pregnancy cause different risks. If you are experiencing partial or absence seizures, the risk to the baby is very little. If you suffer from a tonic-clonic form of seizure, the risks to the baby do increase. (American Pregnancy, 2020). Once again, tracking your seizures and understanding them is very important. It is also very important to make healthy life choices, such as a healthy diet and getting good sleep.
Tertiary is never a certainty
“I got to 19 (years old) and I was fed up.”
Attending school as a child with epilepsy is just as challenging as a young adult, but even more frustrating when you are so close to your dream job but cannot continue any further.
Sarah discusses that she could not go to school;
“I got to 19 (years old) and I was fed up that I was the only one of my friends who had to take all these medications and couldn't drink. So I stopped taking them, which of course one cannot do. And I went into what was basically a coma for 6 days, and then I went into an odd state for 9 months.”
Even though Sarah could not attend tertiary education, Sue went on to study for her nursing degree, as her seizures only occurred during the evening.
“I was fed up that I was the only one of my friends who had to take all these medications and couldn't drink. So I stopped taking it, which of course you cannot do.”
“I had them at night when nobody was around,” Sue said, ”If I had them (the seizures) while being seen by people, I would have not been able to continue with school.”
It is helpful to understand when your seizures take place and if there are any side effects which could hinder you from focusing during classes or in your future professional life. Online courses could be an option, as you have the ability to study at the comfort of your home and draw up your own study schedule that fits your routine. And finding a job that meets your life situation is something for sure worthwhile striving for.
“It does not stop me from going out!”
Even though these challenges limit one from leading the same professional life as many other people, they did not stop Sarah and Sue from building a family, socializing and having fun.
“I enjoy shopping!” Sue excitedly expresses. “It does not stop me from going out.” Sarah emphasises on how she has to mingle - she has to! “I like to, I really have to go outside. Yet I am not often out on my own and when I am, I go to safe places.”
In closing Sarah says, “I can’t live my life wrapped in bubble wrap on the couch.”
One of the interviewees' name was changed
Do you recognise this?
Can you familiar yourself with the challenges of Sarah and Sue? How do you deal with epilepsy as a young adult? Do you want to share your story with our community? Email us! Do not forget: We can feature your story anonymously!
Why we do what we do
1 out of 3 people with epilepsy suffers from uncontrollable seizures despite medication. We believe current digital technologies are able to create a massive impact on the daily life of people with epilepsy. At epihunter we create digital solutions to make epilepsy matter less at moments that matter most. Our first solution is for people with silent, difficult to notice absence seizures and focal onset impaired awareness seizures.
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AA. Westin, A. Reilers, O. Spigset. (2018). Should pregnant women receive lower or higher medication doses? Retrieved 25.02.2020 from: https://tidsskriftet.no/en/2018/10/klinisk-oversikt/should-pregnant-women-receive-lower-or-higher-medication-doses
American Pregnancy Association (2020). Epilepsy and Pregnancy. Retrieved 25.02.2020 from: https://americanpregnancy.org/pregnancy-complications/epilepsy-pregnancy
Epilepsy Foundation (2016. Seizures, Medications and Pregnancy. Retrieved 25.02.2020 from: https://www.epilepsy.com/living-epilepsy/women/epilepsy-and-pregnancy/seizures-medications-and-pregnancy