Blog Post: Alice on Diagnosis

I remember leaving the hospital, aged 19, after my first appointment with my neurologist, not knowing whether to feel thrilled because we finally got a diagnosis, or feel devastated because I knew that was just the beginning of a huge shift in my life. This was such a conflicting moment in my life, and a day that was followed by months of feeling overwhelmed by this new diagnosis.

I’m sure that anyone who lives with a chronic illness or disability can say they have felt overwhelmed by the impacts of their illness. Whether it is the period of not knowing what is wrong with you, the diagnosis, or learning to live with a life-long condition like epilepsy.

Looking back on tonic-clonic seizures that I’ve had since my first one, there have been times that I’ve felt so overwhelmed and terrified that I’ve questioned leaving my house, taking up new opportunities and being around others. The feeling of first gaining consciousness from a tonic-clonic seizure, having no idea what happened or who I am, has stayed with me since this new part of my life began. I sometimes feel overwhelmed by the fear of waking up in pain after a bad seizure, and the distressing memories of these seizures can hit me suddenly at the worst moments, causing periods of intense stress.

Epilepsy can be such a scary condition. You may feel out of control, like your brain is working against you. You may feel such urgency to find a medication which can control your seizures. If growing up isn’t enough pressure, then adding epilepsy to it definitely is.

I’ve been lucky enough to be seizure-free for a year now, and this unexpected achievement, along working on my mental health through counselling, has inevitably reduced my experiences of feeling overwhelmed by the condition itself. But what people don’t think about, is the stress of wondering if you may have another seizure, keeping a sufficient supply of medication and ensuring they are taken correctly, and often having to explain your condition to others. It is definitely not just the seizures that can overwhelm those living with epilepsy.

But, along with mental health support, I have found it so important to make light of the situation, where possible, when explaining epilepsy to people around me. By putting others at ease, it has helped me to feel more comfortable with my diagnosis, and feel more supported. This has made me feel less overwhelmed as I feel like I can speak about all aspects of epilepsy without feeling like it is scaring anyone. I have also made an effort to change my perspective, and see epilepsy as a part of my life rather than consuming my whole life. This has made me feel much more in control of the situation, as I can chose where and when my diagnosis is a part of my life. By not allowing epilepsy and the fear of seizures consume me it is so much easier to feel less overwhelmed, and even positive about this diagnosis.