Blog content: Human: My journey with psychosis

Experts by experience: Young advisor, Amélie-Eve

My psychosis started when I was 16. I didn’t know what was happening. I was scared. Nobody knew how to react, or what was going on. I called them my ‘awake dreams’ because I had never heard of psychosis before. It was like I fell asleep and became someone else, believed in things that logic denies. I had episodes that lasted hours, and some lasted months. I believed God had chosen me to birth his child, receiving a negative pregnancy test only fuelled my denial, I couldn’t be unconvinced. I believed I was on fire, burning, screamed at people to evacuate, tore off my clothes. I ‘woke up’ on the floor with torn fabric around me thinking ‘it must have been a dream, yet there’s evidence it happened, people are injecting and restraining me, what is going on?!’

When I first spoke to a psychiatrist about it, he said I was attention-seeking. This was only 2020, yet psychosis was misunderstood, I hadn’t abused drugs, I was self-aware at times, I was ‘insightful’ (I knew something was going on in my brain, and I could try and explain it). I didn’t fit their boxes. I was accused of ‘making it up’. But, as the incidents worsened, I was started on regular medication. By this point, I was so out of it that it took a lot of reminders, and I was no longer able to consent, but it did improve. An occupational therapist, along with sedatives and anti-psychotics, got me through the first months. Involving me in finger painting and walks, despite my condition. Until, I had more moments of clarity than distress, and I began to feel a bit more like myself again, less scared, less manic.

Anti-psychotics and sedatives are very scary words. For me, it felt like through medication I was being labelled as ‘crazy’. But many illnesses use these drugs: eating disorders, anxiety, sleep disorders, depression, etc. When I learnt that, I realised that it isn’t a mark on me that I was different or broken. The medication had side-effects I wasn’t expecting like akathisia (when your muscles twitch and it feels like you want to jump out of your skin), appetite changes, and fatigue. It is an ongoing journey of trial and error, with different combinations of drugs, figuring out which one really works for me. I’m currently stable on what I take, but the right balance can take months or years to fully discover.

When I feel myself disassociating (becoming distant from my body, not feeling on earth) I use grounding techniques. At the start of my recovery, one thing that really helped was having my ‘first aid kit’: a teddy to hold (his name was Nigel), sour candy (like Toxic Waste), a scrunchie on my wrist drenched in essential oils to smell, and a shortcut on my phone to play a song (I liked to repeat ‘changes’ by XXXTENTACION). Now, I can cope most days on my own, but I still have that first aid kit just in case. I still suffer from psychotic episodes and mania, but it has become more predictable, I’ve learnt my triggers and warning signs and that was a massive step towards having control over myself again.

I’ve had a lot of contact with emergency services, and I find it really helpful to have a safe person in my emergency contacts (my mum), and a card (in my bag or on a lanyard) which helps explain why my behaviour is what it is. Psychosis has a lot of prejudice. I’m not always scared in an episode, sometimes I am crazy happy, which is known as manic psychosis or just mania (depending on wether you see or believe unreal things and mental awareness). This confuses people who think mental illness means unhappy. Sometimes it’s an extreme high, followed by a crash, on repeat, for days on end.

I wish everyone would act calm when I’m in an episode. If you happen to be around someone psychotic, don’t challenge the belief. For example, if there are aliens or secret agents after them, say you’ll protect them, that they are safe or there is a safe place to go to. This won’t always work, but it is better than getting out a camera, or complete ignorance. Don’t have spite for people who act without thinking, who appear drunk or high. There should be less hate on how people act and more understanding of why. Everyone should be treated with respect.

Unlike what some may say, a history of psychosis doesn’t have to affect your entire future and job opportunities. And to anyone struggling, this isn’t something that has to put a stop to any dreams or aspirations, with time, treatment, and healing, it is possible to have the future you desire, even if it looks a bit different from what you thought in the ‘before’.

Finally, if I were to speak to my younger self at 16 or 17, I would tell her, it does get better. I would tell her not to give up hope, that this isn’t the end, that you will grieve, and that’s nothing to be ashamed of, that when you’ve healed, the relief will overshadow that.

The high that the manic episodes bring, you will miss that and crave that. But it’s only going to damage you in the long run. Once you decide to accept the treatment willingly and to take the path of living with yourself as you are, not ‘psychotic you’ or ‘manic you’, you’ll come to realise that real happiness holds hands with calmness.

You miss the ‘before’ right now, and I understand that, but trust that there is an ‘after’. Do the stupid meaningful activity, it sounds dumb, but it will help. Take the medication, you will find something that doesn’t make you a zombie or angsty, it will eventually help you function rather than hinder it. Allow yourself to rely on people. The trauma will last, but it will become much easier to live with. And most of all, don’t always listen to your silly billy brain, there is a voice inside there stronger than the others, find her. She will tell you the truth from lies, that voice is you.

One day, you’ll be an adult who can go on a girls trip and enjoy it. Be independent and thrive. Manage this illness and not have it consume you. I promise you, you’ll be okay.