When I was first diagnosed
I was diagnosed initially with absence seizures at the age of 11. This came as a massive shock to me and my family because I was a very happy-go-lucky child. My parents saw the immediate change in my behaviour due to the constant hospital appointments and from the moment I was put on medication.
My diagnosis was a lot for my family to take in. First of all, we had no idea that epilepsy could be so complicated. Overnight, my parents had to become epilepsy aficionados so they could understand how this disability was going to affect not only my childhood, but the rest of my life
An example being when I started secondary school. Even though my parents were determined to keep my attendance up, it became impossible. With the school not really knowing how to help me, and the many different types of medications not working and causing side effects, my epilepsy was affecting me so much and all I wanted to do was sleep. My mum and dad have always said that they were in disbelief about my epilepsy for years because everything that was going on seemed too surreal. So, they have always held onto that little bit of hope that one day, I would get better.
As I was so unwell, my parents became quite strict. I have noticed that a lot of young people with epilepsy have had this struggle with their parents, and it is hard growing up this way as all we want is our independence. So, from around the ages of 11-13, most social situations had to be at my house. I think being at home more put my parents at ease, as they could keep an eye on me. However, I did feel like a hospital patient in my own home most of the time.
So, I think from my parent’s perspective, they had to find a whole new parenting technique, and it was one that was completely different from their friends. With me, in comparison to my little brother, they had to figure out the best way to parent me day by day, as each day came with new and different challenges. Looking back, I feel as though it must have been so hard for them, as I was so confused and barely understood what epilepsy was myself.
Explaining my disability to me
My parents were always open and honest with me, which I believe is always best. As we are the ones experiencing the condition, we have a right to know exactly what is wrong with us, so protecting us from the condition will only create more damage. Unlike now, there were not many books that explained epilepsy to children and teenagers, so with the help of my amazing paediatric epilepsy consultant, they worked as a team to explain my condition to me.
As I tried to hide my absence seizures from my friends, my parents became more knowledgeable and spoke up for me. It took me a while to speak up for myself, as I was not the confident person with epilepsy that I am today. By my parents doing most of the speaking up for me, I was able to gain confidence myself through their values; they were proud and accepting of my condition, and I was learning to become proud and accepting too. The more confident I became, I began to search online about epilepsy, and ask my consultant more questions on my own. So, if I can say anything to any parent or child out there, form a good relationship with your consultant, because this is what helped me understand what epilepsy is, and that it’s not all bad.
Tonic-clonic seizures
When I was 14, I was diagnosed with tonic-clonic seizures. When I had my first one, this terrified my parents. We had just found the perfect medication for my absence seizures, and everything was smooth sailing. Then, once again, everything started to go downhill. I usually have my tonic-clonic seizures in the morning. They vary in time, but I am always out of sorts for either a week to a month.
I found these seizures (tonic clonics) embarrassing, as I could not hide these from people like my absences, so I felt incredibly vulnerable.
For my parents, they struggled to understand what I was emotionally going through, as I was at an age where I was being rebellious and pushing them away, so I became extremely hard to read. However, every time I ended up in the hospital because of a seizure, all I wanted when I woke up was a cuddle from my parents.
I think what I struggled with the most was having seizures in front of my younger brother. My brother at a young age had to become the older brother to me. As I became weaker, he helped me in any way he could and took my epilepsy in his stride. Something else that became difficult was having tonic-clonic seizures around people that were not family at home, even people like my nan and granddad. One time, my nan saw me have a seizure on the floor naked because I had just had a shower. At the age of 15, like many teenagers, I felt insecure about my body as it was changing, so I felt so embarrassed. However, my whole family were there to support me, and if anything, my seizure brought me and my nan to be closer than ever.
It took me years to find the right tonic-clonic medication, so my teenage years were extremely turbulent for the whole family. My tonic-clonics were impacting my mental health too as they were so uncontrollable at some points. So, I have learnt that talking to my family about my feelings, and them telling me how my epilepsy has made them feel is vital. As your family are usually the people who see your seizures the most, everyone getting their woes and worries off their chest creates this safe space, a bit like therapy, and this will ultimately bring you and your family closer. When someone has epilepsy, their whole family have it too, so everyone rides with it. If you see this as a negative, please do not, as your family, like mine, are the best support system we can have. Without my family, I can honestly say I would not be where I am today, which is a year seizure-free (from May 11th 2020!).
Before I go…
If you do not have a family, then try to find it in other people. Family does not always mean those related to you genetically, and can be anyone that makes you feel at home and safe.
So, to leave my final piece of advice for the last of my blog posts for National Epilepsy Week 2020, try and look on the bright side. Always try and remember all the humorous and funny moments you have had with your family because of your epilepsy. Your epilepsy can change your life for the better, and not the worst! However, always remember that to reach a more positive outlook, open up to your family about how you feel so you can feel free of any negativity.
