7. I am not to blame

So here I am today…

Oh hold on a second, there were a few bits I left out, so let’s skip back a little.

Back in late 2017 I was due to perform in a Christmas concert with my drama club and I was feeling really anxious. I remember the sun flickering through the trees making me feel slightly uncomfortable and slowly things began to worsen; to the point where I felt this feeling of being pushed back over and over again by an unknown force. I blacked out and found myself surrounded by a team of paramedics seeing if I was okay. I had no idea what happened and of course my first reaction was “WHAT THE FUCK?!!”.

Well it turns out that I had a fit. We went to the hospital and visited the specialists and a woman with shaky hands pressed them around my back. I honestly have no idea why she did that but I presumed it was protocol. Half an hour later a doctor walked in and told us that it was nothing serious and that a lot of people experience one fit in their lives. After that we assumed it was all okay and that it was a one-time thing. But quite soon, I started to develop twitches – it’s difficult to explain the feeling I had when I was experiencing them but I’ll do my best. I suppose the feeling was a loss of consciousness for a split second, usually these twitches would happen when I talked about something that evoked an increase of energy, for example when I talked about something negative, or something that made me anxious or even excited. I would jerk my head backwards and blink rapidly whilst looking up for a few seconds. I remember the worst twitch I had was when I was on holiday and speaking to someone in a shop and suddenly my arms flailed backwards and a force pushed me back; that was by far the most powerful. When I began having therapy a couple of years later my therapist thought that it was possibly a stress response, and I happily went along with that theory, favouring anything negative as I was in the depths of my depression. As I started to associate the twitches with negativity they began to become worse and worse.

A few months later, I had a really bad day at school. A teacher decided to embarrass me in front of a crowd of people, probably for her own gratification of receiving attention, but it left me crying in the car feeling really embarrassed and anxious. The next day when my mother was driving me to school I felt that same anxious feeling I had two years previously, the flickering lights through the trees were pushing me back and my mum shouted for me to put on sunglasses, increasingly frustrated that in my strange state of mind, I kept refusing to (she had insisted that I always wear sunglasses in sunny weather ever since the last fit). But her panicked insistence made me even more anxious and suddenly I saw a bunch of flickering lights in my eyes. I blacked out once again and woke up with another team of paramedics standing around me making sure I was okay. Funnily enough my reaction was the same as last time “WHAT THE FUCK?!!”. I had had another fit, but this time it was much worse. The fit lasted longer and I foamed from the mouth.

We went to visit a neurologist who, after we told him, instantly presumed it was photosensitive epilepsy. I had an MRI and an EEG. Turns out that I’ve always had epilepsy and that my brain was constantly having epileptic discharges. No wonder I was always crazy – my brain never stopped spiking. After that I was diagnosed with juvenile myoclonic epilepsy (which was related to the twitches and the epileptic discharges) and photosensitive epilepsy (related to the fits from the flickering lights).

Wow. To hear the word “epilepsy”. You’d think I’d be upset and shocked but surprisingly quite the opposite. As in, of course I had feelings of sadness, that I wouldn’t be able to drive for a year or maybe ever, that I might not ever be allowed to go clubbing, that I had to be extremely careful of everything I do. But in a way it was quite relieving, it all made sense to me. It filled all the pieces of the puzzle about why I behaved so erratically during my depression. I was instantly put on medication which made me extremely anxious and my behaviour became out of control to the extent that I couldn’t cope in school because the staff didn’t know to handle it. Eventually we realised that the medication was causing more harm than good and so we decided that it was best to change it. Thank goodness there was a massive improvement.

So there a few more bits that I was unsure of. The neurologist told me that it was unusual not to have had more seizures during my life so far, so I decided to do my research. Unfortunately I didn’t find the answers to my questions however I did find something else: common conditions that can be related to epilepsy (comorbidities) are dyspraxia, ADHD and autism. I knew I didn’t have autism because my symptoms didn’t fit, but I did think there was a significant possibility that I had ADHD or at least ADD because I’m not hyperactive. So my psychiatrist carried out an assessment and I was indeed diagnosed with ADD. In case anyone is unsure of what ADD stands for, it’s Attention Deficit Disorder. Now all the puzzle pieces fit, and everything finally made sense: why I forgot my coats, pencil cases, and everything else at school or any other place. Also why I constantly replayed every single word someone said to me in my head over and over again until I’d wind myself up into a complete frenzy and why I’d constantly get distracted when someone was talking to me or even when I was talking. I’d lose my train of thought so easily – it is now really clear why I was so disorganised and why I would do things like cross the road without looking.

You see, as a child I was punished if I forgot anything from school (usually my coat). I would usually have to go to bed early or I would be banned from TV for a week or sometimes longer. Because of this, I developed a technique of lying, as the message that I had been taught was that if I told the truth I would be punished, and if I lied nothing would happen. I became a pathological liar; it had turned into normality for me. Anytime I forgot something, I would be scared of the consequences I’d receive when I got back home. So naturally for years I blamed myself for being so careless – when I’d spill drinks (which happened so frequently) I was shouted at and told that I had to make an effort and to stop being clumsy. This crushed my spirit every time because I knew that I couldn’t help it. No one knew I had ADD so I was given barely any support. I believe this was a massive part of my depression; I had been blamed for so long that I eventually turned on myself, and would beat myself up for anything and everything I did. So when I found out I had ADD, it was quite an emotional experience for me. I learnt that it wasn’t my fault.

To anyone who blames themselves for being disorganised or messy etc, and they really can’t help it, just know that it’s not your fault – even when your family doesn’t understand and lashes out because of frustration, it’s not you, it’s a diagnosis. Don’t let people’s opinions of you destroy your soul because in the words of Dr. Seuss “There is no one alive who is Youer than You.” You know your truth and never let people define that for you.

In case you do feel alone, here are some high profile figures who suffer from ADHD/ADD:

Adam Levine, Justin Timberlake, Paris Hilton, Simone Biles, will.i.am, Howie Mandel, Richard Branson (who also has dyspraxia like me), Jim Carrey and so many more.