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Epilepsy Diagnosis: My Mental Health

Interviewer: The first thing that I'd like to kick off with is, obviously this is a mental health blog - so the term mental health, what does that bring up for you? What's your understanding of that?


It's kind of like when someone says physical health, it seems like a really easy thing to think of because it's so easy to see. But mental health is so difficult to put into words because you can't see it. It is how I'm feeling. And the emotions you're kind of going through at that time. It's something that everyone does experience either positively, negatively, or in between. And like to say things like emotions, your feelings, how you are. The sensations of emotions that you experience fluctuates so much and yeah, I agree that for me, that also is like a mental health experience.


Interviewer: So, you have a diagnosis of epilepsy. When, when did that come around and how has that played a role for you?


That has been a massive change in my life. I was diagnosed when I was 20, so that's back in 2019. I graduated the year before, and had just got my first graduate job. And I'd been doing that job for, I think it was about six weeks. And I was unbelievably stressed. I think I cried pretty much every day. And epilepsy is actually triggered by stress and I didn't realise that the reason I was feeling the way I was feeling was because I was actually having seizures. I didn't realise they were seizures. I knew there was something wrong. I'd been going to the doctor for a while and they were trying to pinpoint what the problem was and they couldn't figure it out, but it took so long to get an appointment before I could see a neurologist.

I was previously seeing an eye doctor cause they thought it was something to do with my eyes. And then I got referred to a neurologist and it took six months to see them. And then during the graduate job it got worse and worse because I was so stressed and so I decided to quit that job. A week later I went to the neurologist. I remember being there with my mom and this guy talked to me for five minutes and I remember him doing a few tests in my eyes, talking to me about my symptoms, which were like weird auras. He did weird taps on my knees and I thought, this is bizarre, and then said ‘Yeah, you've got epilepsy.’ And I was diagnosed in five minutes.


This is when my whole life literally changed within that five minutes. I'd been driving since I was 17, so that was six years, so I had to give up, which was a massive change because I was so independent. I used to drive myself to university and to work. Driving is very much a freeing thing to do. You don't need to rely on your parents or anything. You don't have to really rely on much from anyone when you can drive. So that was the major thing.

That completely changed everything and I went into a very, very horrible place at that point because I couldn't even drive home. I had to get my mom to drive my car.


Interviewer: What are things like now?


Now it's very much like the worry of what if I have a seizure here? What if I have a seizure there? The anxiety of little things are a lot more primary in mind and there are so many other factors that come into your life that you wouldn't have even thought about if you didn't have epilepsy. And there's so many, there's just so much to think about that you wouldn't have thought you didn't have epilepsy.


And people think it's like that simple, you know that they haven't been through it and you know that they don't understand the depth to it. There's a huge difference between the emotional ups and downs that we as human beings naturally experience.

Interviewer: How did you support yourself at that time?


I went to CBT therapy. Cognitive behavioural therapy. I did that for six or eight weeks straight after I was first diagnosed. I thought if I go there, they're gonna fix me and I'll be fine. That’s just not the reality - I actually just genuinely accept that this is my new life now. But instead I was just trying to fix myself to be the old me. But basically I did the therapy way too soon and I think it was just reiterating how sad I was and it wasn't productive. It just made me feel worse. It was the only thing I had to focus on, which was bad. They actually suggested you need to go to counselling instead, because you need to talk through everything before CBT therapy because there are so many issues that you need to discuss before you do this.


I just wanted a quick fix and thought that this is the worst place I could possibly be. But to be honest, you actually could be a lot worse. I mean, I still had a roof over my head. I still have a job. I still have people around me that care. I lost a lot of weight. And I remember being at work late and I work in a care home and they weigh the residents to make sure that they're not losing too much weight or gaining too much weight, just to make sure that they're healthy, as it were.


And my colleague started doing it for me. Obviously as a joke but also just checking I was okay. But it was this kind of nod to me, to say that I'm looking out for you, I care about you.

I really appreciated that little thing that he did, which is really lovely actually, and I will never kind of forget that.


Interviewer: Is there anything that you do now on a daily or a weekly basis, to take care of your wellbeing?


Going to the gym has been a major thing for me. I've always gone to the gym, always have, always will. I've been going since I was like 16 or something. So that has always been a positive thing for me when I was feeling low at the university or felt stress, it's a massive stress reliever. And I love going with friends and them in something I'm quite passionate about and it's so good for your mental health. And just sitting and drawing is kind of like a little escape. Just having a little time for myself and just me, and just drawing. And I would just draw random stuff that would just would make me happy which turned into a little side business.

Emma's business can be found at: https://byemmadearling.co.uk


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