Ashley shares how her epilepsy has affected her mental health, the challenges she has faced, and what she would say to someone who has been newly diagnosed with epilepsy.
How did you feel when you first knew you had epilepsy?
I was born with epilepsy, so I’ve always known. I was supposed to have had seizures as a child, but I was too young to remember.
Also, I remember I used to say in primary school I had epilepsy, but don’t have seizures anymore.
So, my epilepsy never bothered me when I was younger, and I had no seizures during primary school.
When the fair was here one year, I’d usually go to it with friends, for some fun. I never really liked the Waltzers ride though, but I’d go on it anyway.
But this one time, during my teenage days, I came off the Waltzers with friends and they said I was acting ‘weird’. They all thought I was messing about, telling me to get up when I had collapsed to the ground.
Then one friend realises ‘she’s having a fit!’ I think I was about 14 years old. This is when my seizures started to come back and haven’t left me since then.
What type of seizures do you have? How does it affect you?
I have tonic-clonic seizures. But about seven or eight years ago, I was offered surgery to get it removed as I had a seizure at work and they knew I had suffered epilepsy, but this one seizure I had wasn’t one of my regulars (having one tonic-clonic seizure).
This was a cluster of seizures, where I was having them repeatedly back-to-back, needing an ambulance ASAP.
When I was offered the surgery, I researched this on the internet before deciding. You see all the good successful stories saying things like ‘not had a seizure since surgery, best decision ever made’ etc. So I was definitely going to get this done and couldn’t wait to never have a seizure again.
But like I said this was about seven or eight years ago, and I’m still having these cluster seizures, and the surgery hasn’t worked at all for me.
I had to leave my job as I was off for two years trying to recover and had to go on benefits as I had no income, and no job.
I was actually a little disheartened that no one from work had even called to ask me how I am etc.
It is quite frustrating having seizures. As I’ve had them almost everywhere you can think of – whilst sleeping, attending weddings, and on first dates.
I’ve been on nearly every medication and even surgery hasn’t improved them.
What challenges have you faced since being diagnosed with epilepsy?
Every special occasion you have – such as weddings, parties, or being in a group of new people on a night out can be a bit nerve-wracking.
As I’m always thinking “what if I have a seizure!” I’ve already had seizures at weddings now and you don’t want to be the person taking the limelight off of the bride, but it’s happened.
It just makes you feel really down, and I can barely even remember the weddings now.
Meeting new people, getting that aura I sometimes get when you’re about to have a seizure, which makes me rush to the toilets, just to get some peace and to take a breather.
This is probably one of the things you really shouldn’t do if about to have a seizure.
Did your epilepsy diagnosis affect your mental health? If so, in what way?
I think it has affected me mentally. If I wake up in the hospital, I know what’s happened. I’ve been upset by it a few times.
Especially if it’s happened on dates. As you’re trying to make a good impression and then that happens.
I also get so annoyed if your doctors are wanting to put you on a different medication or a higher dosage of your medication and you know this isn’t going to work.
I’ve told my GP before that I want to just stop taking medication now as it’s not doing anything and he said we’d have to lower the dosage first, which I did and I coincidently had a seizure, so my GP wasn’t allowing me to go lower and to keep it as it was.
I’ve also found out that if you’re ever planning on having children you must tell your doctor, as you cannot be on this medication I’m on as it’ll harm your baby.
Also, you’d probably have to have a c-section during labour too, just in case a seizure happens.
This also makes me think, what if my children end up having epilepsy too, and what if it’s even worse than mines?
I’d feel really guilty if that ever happened and gives me second thoughts about having any children.
Do you feel that epilepsy has stopped you from doing what you want to do?
I have been on benefits since having surgery now and because of benefits, I’m not allowed to work 16 hours or over.
This means I can barely get a part-time job as most part-time jobs are 16-20 hours and on a low wage.
The job I have now is about seven to ten hours a week, cleaning a pub and on a low wage.
I was refused to do HNC/HND beauty therapy as the UV lights might affect me. So that was two years down the pan I thought.
I had even studied holistic therapy too as I thought this might help get me a job within a salon, which it didn’t as most salons were wanting HN qualifications.
I had worked in a care home for a while, only to have a seizure there and the next day I’m getting told ‘you didn’t tell us you had epilepsy?’
But I was never asked in the interview, and it wasn’t mentioned in the application form either. They must’ve thought of another reason to let me go, without trying to discriminate against me.
I’ve applied to so many jobs only to be knocked back as I lack qualifications or the ‘experience.’
The only way to get ‘experience’ is to actually get a job in it, but if no one is hiring you, you’ll never have the experience.
What would you say to others who have been recently diagnosed with epilepsy?
Don’t let others judge you. Medications and surgery don’t work for everyone, don’t rely on them.
If others don’t talk to you because you’ve had a seizure/s, they’re not worth it.
Live your life to the full. Try to get enough sleep and try to stress less (easier said than done).
If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at firstname.lastname@example.org or call 0141 427 4911.