Some un-edited, first draft thoughts for Mental Health Awareness week!
At 15 I was diagnosed with Juvenille Myoclonic Epilepsy following a big Tonic Clonic seizure when I was alone on a train. Subsequently it was realised my life-long history of ‘behavioural problems’ where infact Absence seizures. The physical effects of my epilepsy were dealt with relatively quickly, trying a truck load of drugs to ‘manage’ the symptoms, the actual seizures.
However, the emotional impact of being diagnosed with Epilepsy was never even discussed. The sudden labelling as a ‘disabled’ person, the restrictions put on me, the overnight terror my family tried to hide from me but that I could feel radiating from their hearts was never mentioned. The casual mention that I might never have children and the cataclysmic realisation that at any moment I could have a seizure, hurt myself, die even, was life altering in a way that I don’t think words can fully describe. Not to mention that the drugs had side affects, made me not sure if the way I felt was ‘me’ or the drugs. All that mattered was that as far as Neurologists where concerned, I was OK. My Epilepsy was ‘relatively well controlled’….yes I had ‘breakthough random absences’ but generally it was OK.
When I was about 18, the panic attacks started. At first I thought they were a new type of seizure. My vision would go funny, I’d hyperventilate, sweat, feel sick, like I was going to pass out. My EEGs revealed that this wasn’t epilepsy. Simply ‘fear of it’ my Nerurologist said and recommended some CBT therapy. For him it was good news. For me it was another part of Epilepsy that I just had to ‘handle’. The CBT (Cognotive Behaviour Therapy) helped for a bit. I did yoga and learnt about meditation. That helped. A bit. I hid how I felt. Laughed it all of. Made light of epilepsy. Avoided talking about it at all. Left the room if anyone mentioned it. I couldn’t watch anything with people having seizures in it. I despised Epilepsy charities. Hated my Medic-Alert wristband.
Then I started to get Back Pain, small things at first, a twinge, my book would ‘go’. Then there would be a week every now and then that I couldn’t walk I’d be in so much pain. I thought maybe a seizure had hurt my back somehow. Then I went through a work discrimination case about Epilepsy. After that I couldn’t walk for six months. Was told I might never walk properly again. During that time I received a diagnosis of PTSD- post traumatic Stress Disorder linked to Epilepsy. I had flashback to the worst seizures I’d had, nightmares, panic attacks. Even when my Epilepsy was ‘good’ I lived in fear of not getting enough sleep, not having enough food to balance my sugar levels, anything that might trigger a seizure. After much research and countless doctors visits, I learnt that I have a stress-induced Chronic Pain Condition. I believe this was started when the emotional impact of my diagnosis was ignored. It flares up when I have a negative thought which triggers my body into flight or fight response, restricting oxygen blood flow to my muscles, normally my back which is agonising- much like when people blush or get errections – a thought = an actual physical symptom.
Slowly I began to change my life. And learnt to walk, then run again. I started to have regular Body Psycotherapy which I make a priority. I work constantly on trusting body, I prioritise my mental wellbeing and recognise that for me this has been the biggest impact of Epilepsy. Some days are harder than others. Connecting with other people with epilepsy is a big step for me. Epilepsy is so very much more than seizures.