Mental Health Awareness Week 2020: My Experience with Dissociation

Due to the personal nature of this article, the author has chosen to remain anonymous. This is something any of our writers are able to do, just get in touch to talk about it.

Last term at uni was one of the strangest and perhaps scariest of my life. After a brilliant start to my first year, I made a solid beginning to Semester 2, finishing my exam and assignments and making plans for several exciting creative projects to take place over the next couple of months. Then one night mid-January, I experienced something which had been happening to me roughly once a month for the last two years.

‘Shitty Mental Health Nights’

Alone in my room, about to go to bed, I suddenly felt strange and detached from my body and from a certain level of reality. I found myself in a sudden overwhelming state of discontent, anxiety, and ultimately, panic. When this happened I would instinctively do things such as changing into colder clothes, lying on the floor, or sitting with my back against a hard wall, or wrapping my arms around myself and squeezing tight.

For two years, I attributed nights like these to pre-existing stress, anxieties and depression. It took me a year or so to notice the almost monthly pattern they came in, for which I still have no explanation, only vague theories about hormone cycles or occasional considerations of lycanthropy (jk)! Each time, I would cry and stress until I eventually fell asleep, then I would get up in the morning feeling normal and go about my life as usual, telling no one. In my diary, I called them ‘shitty mental health nights’ and left it at that, knowing they would come back but seeing their brevity and apparent relation to existing stresses in my life as reasons to label them No Big Deal and Nothing To Worry About.

After the night I had in January, however, this attitude changed.

This time it occurred in an entirely happy and stress-free time of my life: I was thoroughly enjoying uni, doing well in my course, had a brilliant group of friends, was in a happy relationship, and what’s more, that week had finished all my exams and assignments and was yet to start back at lectures. Yet I suddenly found myself alone in the dark, in utter despair and anxiety with no clue as to why. What’s more, the feeling was elevated, and thus so too was the panic that came with it – seeing my reflection in the mirror shocked me and I could find no grasp on the concept that it was me; my attempts to feel real and connected again became more harmful, such as pulling hard at my hair; depressive thoughts that I had experienced before were now unbanishable, because anything I could usually comfort myself with – thoughts of my loved ones – seemed completely and utterly not real, let alone part of my reality.

I was lucky that I had found a very good group of friends at uni, my partner included, and so, for the first time, I gathered up the courage that week to tell a couple of them about what kept happening to me. Describing it out loud for the first time to someone else, I realised how serious it sounded. “God, I sound MENTAL”. Thankfully, those with their own experience of mental health issues, whether personal or those of a family member, were able to remind me that I was still myself, the multifaceted person I’ve always been, and that this was just something that sometimes happened to me.

Finding A Name: Dissociation

Over the past year, and then again from one of my closest friends at uni, I had come across the term ‘dissociation’. As I started to become more aware of the disconnected and unreal feeling each time and stopped simply labelling it ‘stress’, I realised that dissociation could very well be what was happening to me. I found some websites (linked below) which listed symptoms and quoted people’s personal experiences, and though there seem to be a lot of different forms of dissociation, often contradictory and of extremely varied severity, enough of what I read resonated with me that I accepted dissociation was almost definitely what I was experiencing each month.

https://www.mind.org.uk/information-support/types-of-mental-health-problems/dissociation-and-dissociative-disorders/about-dissociation/

https://www.nhs.uk/conditions/dissociative-disorders/

To put it simply and generally, dissociation is a response from the brain to stress or trauma, almost like a flight response, often linked in with other mental health conditions such as depression or anxiety. It seems to me that my brain began dissociating in response to depression, and maintained it as a sort of mental reflex so that now it can occur before I even recognise feelings or symptoms of stress. At the end of the day, this is all theory and I still don’t have a diagnosis or many clear answers. But having a name for my experiences was helpful, and gave me a slightly stronger sense of control.

Furthermore, having a name for what I was experiencing meant it was easier to tell those around me who maybe had less experience with mental health. When I told my partner it was called dissociation, they said “That’s good that it has a name, because it means you’re not alone, right?” 

A friend, on hearing the word, said “Like the guy in ‘Hannibal’! Oh, well, you’re not a psychopath, but when he has that they get him to say his name and then draw a clock with the right time on it”. And I laughed. More severe instances of dissociation can cause periods of blackout and subsequent amnesia (though depictions of mental health in shows such as ‘Hannibal’ is perhaps a discussion for another time) – but having a name for it gave this friend a point of reference and made for a conversation that was far easier and much less scary (dissociative murder sprees aside!) than: “So I have these nights where I feel really weird and not real and I cry a lot and bash myself against the wall.” 

And I still sit and repeat my name to myself sometimes when dissociating. Like seeing your reflection, it’s a very strange and disorienting feeling, but it can ‘bring you back to your body’.

‘Grounding’

I learned that the things I instinctively did in response to the feeling of dissociation – making myself cold, pressing against something hard, pulling at my hair or scratching at my skin – were ways of ‘grounding’ myself, making myself feel real again. A good friend of mine found a website for me with a long list of grounding techniques, which enabled them to help me from afar, helped both of us feel more in control of the dissociation, and prevented me from turning to perhaps more self-harmful methods.

https://www.beautyafterbruises.org/blog/grounding101

Essentially, grounding is about activating your senses. Drinking ice cold water, chewing gum, sniffing something with a strong scent like a candle or deodorant, doing push ups, and listening to music through headphones can all be very helpful. Ultimately you are trying to avoid going into a trance state, so instead of telling yourself to just try and sleep it off, actually obeying your body’s – or brain’s – need for stimulation will likely help the dissociation pass more smoothly. You still have to wait it out, but knowing these grounding techniques soothes my feeling of helplessness and subsequent panic.

Messaging a friend while they guided me through the list in the middle of a late-night dissociative episode was a great comfort, and after an hour of doing random shit like smelling blankets and patting my head while rubbing my tummy on my friend’s instruction, I started to giggle a little for how silly I felt – which is part of how grounding techniques can help, relieving the panic and seriousness of it all.

Going To The GP

Ultimately, telling the people around me about my experiences changed everything for me. Yes, it was an extremely difficult and scary decision to acknowledge something so ‘crazy’-sounding and allow it to take up a much bigger space in my life and thought than I had previously let it. But they helped me finally accept that I didn’t have to live the way I was living, putting up with something I knew would always come back, no matter how brief, and helped me feel that this was worth it to start trying to recover. Thanks to the encouragement of these friends I gained the courage to tell perhaps the most important people of all – my mother, and a doctor.

The subsequent appointment was interesting. I’d written down all the things I’d wanted to say, but so much of my personal mental health – such as my past experiences with depressive symptoms and suicide ideation – was difficult to explain when I had never been diagnosed, and when I wanted to focus specifically on navigating and maybe curing the dissociative symptoms. The doctor listened well enough, but ultimately said he wasn’t sure it was a mental health problem, and referred me to the neurology department for possible temporal lobe epilepsy – an appointment which was eventually scheduled for October. Over eight whole months away.

I wasn’t sure how I felt coming away from that appointment. I was glad that something was being done, and hey, I’d put up with it okay for two years, what’s another eight months? But I wasn’t sure about how quickly dissociation had been dismissed, especially after doing some of my own research on temporal lobe epilepsy. Self-diagnosing may not always be recommendable, but ultimately, I had made the decision to finally try and deal with what I was experiencing – and waiting another eight months to maybe find a way to do so was not what I wanted. It wasn’t fair to myself.

Dissociating In An Unfamiliar Environment

This became especially true when my next dissociative episode occurred a few weeks later, while I was out with friends – the first time it had occurred while anything other than in my room alone. I was lucky that I was with my partner, who could tell I wasn’t myself, and who, upon me whispering “I think I’m having an episode”, immediately asked if I wanted to stay out or go home, and spent the rest of the night checking in on me, allowing me to cling onto their arm, and drawing attention away from my perhaps strange behaviour – mostly leaving the group to go sit or walk by myself – although it’s sometimes surprising how much goes unnoticed by those less close to you.

I was also lucky to be able to message one of my friends, who had experience of similar mental health problems. They checked I was safe and were able to lowkey guide me through the episode over text, and advised me against games such as Mario Kart (which my friends were playing at the time), due to the overstimulation of flashing graphics and the often disorienting effect of staring at a screen. Getting some fresh air I think did me some good too. Interestingly, this having been my only experience of dissociating while also drinking alcohol – though similar in several ways, I found I was able to distinguish between the sensation of dissociation and the sensation of being drunk, though it is difficult to articulate.

Having someone with you – to hug you, hold your hand, maybe talk to you (though often noise and light are the first things you want to get away from when dissociating) – is perhaps one of the most effective ways of grounding yourself, though of course involving other people in your mental illness can be complicated for a myriad plethora shitton of reasons. Accepting my friend’s offer to come over in the middle of the night and stay with me until an episode passed – though incredibly kind of them and a wonderfully helpful and comforting relief – also brought with it a lot of feelings of guilt and selfishness which I am still dealing with.

Burnout 

The term unfortunately only got harder for me as I later experienced a complete burnout and exhaustion, and subsequently the worst period of depression I had had in a long while. But I once more had my friends and flatmates, some of whom were going through their own very difficult periods – together, we looked after each other by talking through what we could, taking walks together every day, helping each other fill in special considerations forms for assignments, and looking at shit memes or playing cards together in the evenings so we didn’t go to bed feeling low.

As with my two years of doing nothing about the dissociation, it took me far too long to go to my personal tutor and ask for special considerations. There is a difficult balance to find when talking about mental health, between defining yourself by your mental illness, and acknowledging it as real in order to get help, destigmatise it for yourself and others, and ultimately cope/recover. It took me several weeks of being too exhausted to make the 20 minute walk to campus without stopping, being unable to concentrate on writing any more than 6 words of my essays a day, and wishing desperately that I could just stop being a person for a while, before I finally admitted to myself that I was ill.

Sometimes it’s very easy to forget that an illness may be a mental one, but its effects are nonetheless physical. Saying that I was ill reminded me to treat myself as I would if I had the flu, or a broken bone. It reminded me that I shouldn’t expect myself to continue with my life as normal while my mental health was as bad it was, and certainly no one else would expect me to either.

The same goes for dealing with my dissociation. Once I’d done enough research to be pretty sure it was what I was experiencing, or at least that it was very similar, from then on, the more I read, the more in control I felt of a part of my life which I was previously scared to acknowledge. I’ve become more comfortable with it, reinforcing the idea that it is not who I am, it is just something that happens to me. I feel that I deal with each episode with a little more grace, and have gotten used to messaging or calling friends who have let me know their willingness to support. Even calling the occurrences ‘episodes’, a word which some of my friends are reluctant to use, has helped me personally come to terms with what I’m going through and divorce the illness from my identity.

Meds

After returning to the doctor’s during the burnout, I was prescribed antidepressants, which it was suggested may help with the dissociation too. Funnily enough, this second doctor said my experiences sounded much more like dissociation than a neurological problem to him – which is a common story when it comes to mental health diagnosis. The strangeness and monotony of the current lockdown situation makes it difficult for me to measure the meds’ effectiveness thus far – however, I haven’t had a dissociative episode in about a month and a half, which, though tentative, is great news. Meanwhile, I still have that neurology appointment scheduled for October (*insert lament about the UK’s mental health services here*).

I take the meds every night and I’ll admit there is a part of me which does not like it – that small part of me which still stigmatises being mentally ill. But then again I think that’s somewhat unfair to myself – no, I don’t like being mentally ill. Why should I? Nobody wants it and I wouldn’t wish it on anybody for the world. But I’m coming to accept it as part of my life now, and the rational side of me knows that confiding in my loved ones, asking for help, and for me personally, trying a course of antidepressants, are the best ways for me to play the hand that life has dealt me.

Support Network

Ultimately, having several people who I know I can call when my mental health is bad, including during dissociative episodes (which unfortunately mostly occur late at night), has been an absolute godsend and I am so thankful for the support network I have been incredibly lucky to have. It also takes the ‘burden’ off any one friend or family member, and so eases my difficult feelings of guilt. Whether it’s sitting with me silently, guiding me through grounding techniques, or quietly video calling me at 1am while messaging the plot of ‘Tiger King’ to distract me, confiding in my friends about my mental health and allowing them to help me has taken much of the loneliness, confusion and panic out of my dissociative episodes.

I realise that having such supportive people around me is a huge privilege that not everybody has, which is partly why I wanted to write this piece, as well as to provide some information on and insight into perhaps a lesser-known mental health condition in the ways that I could. I’m submitting this anonymously through the Hysteria Collective, but I have said that if anybody should ask, then I will be happy for the Collective to share my details with those who would like to talk about dissociation, depression/suicide ideation, or other aspects of mental health. I have also tried to provide as many useful links as possible in this piece, in an attempt to make the most reliable and relevant information easily accessible.

Further links:

Musician dodie also has some interesting videos on her YouTube channel about her own experiences with a more permanent form of dissociation called derealisation:

And the charity ‘unreal’ is a mental health charity focusing specifically on those suffering from dissociative disorders:

https://www.unrealuk.org/

Photo by Bonnie Kittle

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