Sinead Corcoran opens up about living with derealisation disorder

Sinead Corcoran her for a story on mental health, Reset Magazine. 17 October 2022 New Zealand Herald photograph by Dean Purcell.

Derealisation is a dissociative disorder, commonly linked to depression and anxiety, and sometimes brought on by childhood trauma. Sufferers experience a dream-like state, where they feel detached from their bodies and things around them don't seem real. Writer Sinead Corcoran opens up about her derealisation diagnosis and her experience of living with the disorder.

Content warning: this story mentions suicide and mental distress.

The week before my 29th birthday my brain snapped and I thought jumping off my balcony was the only way I could escape from it.

I can now see that my mind had been breaking down for a while. Every time I got a slight twinge or noticed a tiny irregularity in my body, I would be googling cancer symptoms. I scoured WebMD at least three times a day. I made doctors' appointments every other week.

There was never anything wrong with me but despite the doctors' ever-patient reassurance I never believed them. I was convinced that I was going to get cancer, it was just a matter of time.

I know now that my mum's death from breast cancer was the catalyst for this - but at the time I was convinced I was undiagnosed; a tumour slowly killing me that no doctor had spotted.

In fact, there was a tumour. But it was metaphorical - a poison in my brain. Anxiety.

I've always been prone to bouts of anxiety but in the months leading up to my birthday, my worrying snuck out of control.

I say snuck because I didn't spot it at the time. Neither did my partner. I think when you're so familiar with your own anxious brain - or your partner's mad hypochondria - you don't spot red flags.

Derealisation can cause reality to become blurred. Photo / Getty

The week leading up to my birthday I was under a lot of stress at work. I had stopped sleeping. After a recent back injury resulting in a trapped nerve, I had become fixated on the idea that I was going to have to have my leg amputated. I would ask my partner to examine my body parts under his iPhone torch, to check for signs of cancer.

The day my brain snapped I was rabid in my internet search for proof of the fatal disease that was killing me. I tried to stop. After four hours of constant googling, I tried to make myself stop by having a shower. A minute later, I had to get out to go and fetch my phone so I could google while I showered. That's the last thing I remember before everything changed.

I can't remember if it was a slow dimming of the lights in my brain or if they switched off instantly. All I remember is feeling like I'd drunk two bottles of wine all at once.

I got out of the shower and everything was almost cartoon-like. I was moving in slow motion.

I looked at myself in the mirror but I couldn't focus. I was just a shape with no detail.

I knew I had been hot in the shower but I felt nothing. I bit down on my hand, so hard it bled. Still, nothing.

I knew where I was. I was in the bathroom. But I wasn't really in the bathroom. The bathroom wasn't real.

I came to the conclusion that I must be asleep and that this was a dream. Except a few minutes ago I had been awake. So how had I fallen asleep in the shower? And why wasn't the water waking me up?

All I knew for certain was that something had gone very, very wrong. And I was convinced it was my fault.

Derealisation was first used as a clinical term more than 120 years ago yet it remains widely misunderstood.

For many years, Dr Daphne Simeon led a depersonalisation clinic at New York's Mount Sinai School of Medicine, specialising in a variety of psychotherapy and psychopharmacological treatments.

In Simeon's book on the disorder, Feeling Unreal, co-written with Jeffrey Abugel, she quotes from a patient named Joanne: "I'd really rather have cancer than this. With a disease that people know, you can get some degree of empathy. But if you try and explain this, people either think you're crazy or completely self-absorbed and neurotic. So, you keep your mouth shut and suffer silently."

In comedian and actor Bo Burnham's award-winning Netflix special, Inside, he mentioned the psychological phenomenon of derealisation, sparking a wave of interest in the condition. The show - a mix of music, comedy and powerful introspection - came after the American star's previous revelations of his battles with mental health, depression, anxiety and dissociation.

Comedian and actor Bo Burnham explores revelations of his battles with mental health, depression, anxiety and dissociation in his Netflix special, Inside. Photo / Getty

My psychiatrist, Dr Giselle Rausch, describes derealisation as an experience of feeling detached from your surroundings, in a dreamlike or lifeless state.

"Depersonalisation and derealisation (DPDR) commonly coexist with a mood disorder, namely depression, anxiety and post-traumatic stress disorders. Symptoms are often triggered or evoked by stress or fatigue causing significant distress and interference with a person's ability to function," she says.

Unlike other psychotic disorders, people with DPDR know that their experiences of detachment aren't real – which makes it all the more frightening.

About 50 per cent of the general population have had at least one transient experience of depersonalisation or derealisation in their lifetime. For most people, it's basically like zoning out when you're driving and not remembering the drive home.

However, only about 2 per cent of people meet the criteria for having DPDR where episodes can last for hours, days, weeks or even months.

Often, people with DPDR have experienced past trauma in their lives, including emotional, physical abuse or neglect in childhood. My understanding of it is people like me develop DPDR in childhood as a protective measure to shut their brain down when what's going on around them is too much to bear.

For me, it manifests as a surreal, dream state, like I'm really drunk – except not fun at all. It mostly affects my vision and I'm unable to adjust my eyes to look at things in the foreground, and I lose all feeling in my body – I can't feel ice or boiling water, pain or pleasure. I also have no attachment to my short- or long-term memories, they just feel like episodes of a show I watched a long time ago.

At the peak of my first episode the week before I turned 29, I became so convinced I was dreaming that I thought I needed to jump off our apartment deck to wake up.

It was at that point I called the mental help crisis team and their incredible staff spent the next eight hours on the phone with me while I screamed and shook and cried. I was also in real physical pain. My body had started to seize up from shaking with fear.

I was almost immediately diagnosed with DPDR and I've been an outpatient at The Taylor Centre in Auckland ever since while they try to find medication that will keep my episodes at bay. But therein lies the rub - there is no exact treatment for DPDR.

Because it's an extreme version of anxiety and panic, they've found that the best chance at minimising episodes is through talk therapy, cognitive behavioural therapy, anti-depressants and anti-anxiety medications.

In the past year, these medications have made me gain more than 20kg. I've gone from a size 10 to a size 16, none of my clothes fit anymore and I've lost all confidence in my appearance.

I resent my mental illness a lot, particularly as it's likely something that developed due to childhood trauma and situations that were completely out of my control. It feels really s***ty that it's now impacted my quality of life so much and in turn my career.

I used to work in busy newsrooms and on TV production but those environments can be hard for me if I'm having an episode as I'm really sensitive to noise and fluorescent lights. I'm now working as a freelance writer, which gives me the freedom to work from home when I need to be in a quiet space, and I only work when I want to.

While my partner and I are by no means "comfortable", we are in a financial position where we can afford for me to stop working when I need to have a break and for that, I'm really grateful. It terrifies me to think about if this had happened to me when I was single and flatting, with no parents to support me.

When I am having an episode, I cancel plans unless they're with very close friends who understand my illness. Group hangouts and family dinners can be hard for me as it's lots of people talking all at once, which can be too much for my brain, so these days I find it easier to spend time with people one on one.

I also don't go anywhere that's overly stimulating like supermarkets or shopping malls, and I avoid driving as it's terrifying when you can't see properly. I'll also have lots of hot showers to try and reconnect the split wires between my brain and body, and sit next to my partner as much as possible - he's the human equivalent of a weighted blanket.

Having kids in my house also helps as nothing jerks you back to the present quite like constantly bleating children.

The symptoms of depersonalisation and derealisation can be countered with the same treatments used to battle anxiety disorders, says Rausch.

Derealisation is commonly linked to depression and anxiety. Photo / Getty

That means a combination of psychotherapy to manage the underlying causes and medication to fight the "underlying neurobiology" - inflammation of the brain due to stress hormones.

In the year since I was first diagnosed, I've tried multiple types of therapy and countless combinations of medications. And while they do help a bit, I haven't found a cure yet. My best chance at avoiding episodes now is avoiding my triggers, like stress and exhaustion.

Having a mental illness is isolating enough but having one that no one's heard of is even more so. I joined a Facebook group for people with DPDR and it's great for feeling less alone, but it can also be a scary place. It's full of desperate pleas for a cure, and horror stories from people who have been stuck in episodes for years on end.

I've recently been put on a new medication called Lamotrigine, so I'm hopeful.

In the meantime, I'm eternally grateful to my supportive partner, my friends who check in on me and the public mental health system. It is an underfunded system that comes in for a lot of criticism but I genuinely believe I wouldn't be here today if it weren't for the staff at the Taylor Centre who stayed with me on the phone that night on my balcony.

The frontline staff do so much with so little, and with one in five adults being diagnosed with a mood and/or anxiety disorder, we need mental health services now more than ever.

As a former dating columnist, I've been writing about my personal life for the better part of a decade but I've been really apprehensive about sharing this. While society is now much more accepting of mental illness, it still feels terrifying - and career-limiting - to write this for public consumption. But I've decided that if it sheds some light on an illness that's relatively unknown or it makes one person with DPDR feel less alone then I'm doing something good.

While I'll probably have to live with this condition for the rest of my life, in the year since I was diagnosed, I have found ways of coping – and part of that has been re-examining my lifestyle. I quit coffee, I sleep a lot – usually 10 hours a night - and I'm trying to cut back on alcohol (not very successfully).

Psychiatrists also recommend grounding exercises like planting your feet on the ground, naming sounds and smells you can hear and touching funky-textured things, and while I'm sure that works for most people - and this is TMI - the only other thing that seems to help me a bit is having sex, or the less-fun version, doing exercise.

I'm not great at getting to the gym as it tends to make me more anxious but I have recently started walking neighbours' dogs as a way to get me out of the house and doing gentle exercise that doesn't spike my cortisol.

Another thing that often helps me is TIPP (temperature change, intense exercise, paced breathing and progressive muscle relaxation) skills. These are used to "connect back with your body and your surroundings", says my clinical psychologist, Shruti Pathak.

"If you feel your emotions getting out of control or feel yourself dissociating, you can use the TIPP skills to help ground you."

For example, when I feel like I'm starting to dissociate I'll take some medication and then put a bag of frozen peas on my face while I wait for the medication to kick in. I'll then squeeze my hands into fists and breathe in for three seconds and out for seven and then do a few star jumps or run on the spot.

Pathak says these techniques help to lower the intensity of your emotions and bring you back to the present, to distract from whatever is triggering you and help "focus on what is going on inside your body, and can bring you outside of the emotions that may lead to dissociation".

Unfortunately, though, these things only help alleviate an episode by about 10 per cent. For me, I have to just try to stay calm and wait it out. A "good" episode lasts a few hours, an average one a couple of days and a really bad one lasts two weeks. Then eventually I'll start to come right until the next one.

I turned 30 in July. I'd love to say it was perfect - but I had another episode. It was hard but it wasn't as terrifying as that first time. And it didn't last as long.

I'm getting married next week and I'm really worried about the stress triggering another episode on the day, but while I hate my mental illness, I'm no longer scared of it. I know it's my brain's way of protecting me.

I know this won't be easy but I also know I'll never stand on my balcony again thinking I have to jump off to wake up. I know I'm awake now, I'm just sick. But I have hope.

What is Derealisation?

Experiencing derealisation can feel like the world is not quite real and people and things around you are lifeless or foggy. The feelings can be very disturbing – like you're living in a bad dream. The National Health Service in the UK says derealisation is often linked with depersonalisation under the term depersonalisation-derealisation disorder, which is one of the main types of disassociation disorders. Depersonalisation is where you have the feeling of being outside yourself and observing your actions, feelings or thoughts from a distance. You can have depersonalisation or derealisation, or both together. Episodes may last only a few moments or come and go over many years.

Where to get help:

If you are worried about your or someone else's mental health, the best place to get help is your GP or local mental health provider. However, if you or someone else is in danger or endangering others, call police immediately on 111.

Or if you need to talk to someone else:
Depression helpline: 0800 111 757 or text 4202
Lifeline: Call 0800 543 354 or text 4357 (HELP)
Suicide Crisis Helpline: Call 0508 828 865 (0508 TAUTOKO)
Need to talk? Call or text 1737