Episode 2 — Luisa

EPISODE TWO: “LUISA — A BURNING BUILDING NO ONE ELSE CAN SEE”

NARRATION

Hey there. As well as containing one or two swears, this episode tackles anxiety, and in particular, a version of anxiety known as Obsessive Compulsive Disorder. Just a heads up that it contains discussion of depression, and graphic intrusive thoughts involving self-harm, suicide, and violence against others. If you think this might trigger something in you, maybe skip this episode. We also want to stress that this is just one person’s story, so may not reflect the experiences of others.

music: ominous drone

LUISA 

It seems to be spoken about as if it’s associated always with perfectionism, neatness, order, preferences. So I’ll often hear people on an escalator be like, “I just need to stand on the left side, I’m just so OCD.” Or in the workplace, “I can only write with a black pen. I’m just so OCD.”

NARRATION

This is Luisa. She’s 24, and doing her honours in psychological science at Swinburne. She also has OCD, or Obsessive Compulsive Disorder. I’m happy to be speaking with her, as I experience OCD too.

LUISA 

Yeah, it makes it quite hard to want to explain to somebody what it is when they’ve got that kind of shallow understanding of what the condition is. You’re worried that if you really try and explain what it’s like, it’s going to be too much for them.

NARRATION

Okay, so there are two main parts to OCD: the obsessions and the compulsions. We’ll cover the compulsions later.

LUISA

The majority of my obsessions have revolved around the fear of causing harm to other people, or the fear of causing harm to myself.

NARRATION

It’s important to say up front that not all people who have OCD experience it in the way that Luisa or I do. While fears relating to harm are very common, many people don’t have them, so please don’t take Luisa’s story as being representative of everyone or an entire disorder.

LUISA

And, for me, OCD has always been really complex and confusing because OCD doesn’t mean that you have a break from reality.

NARRATION

So, have you ever been at a park, or waiting for a train, or on the balcony of a high-rise and all of a sudden you have an awful thought rush into your head? It might be about kicking a dog, or pushing someone onto the train tracks, or leaping off a building.

These types of thoughts might be scary and unwanted, but they’re also pretty normal. Psychologists will tell you that often these thoughts are just the brain doing its thing. One of the joys of being alive is that sometimes we think of the most inappropriate thing imaginable. Thanks brain.

For most people, seconds after these thoughts come into the brain, they’re dismissed and forgotten. But for people with OCD, like me and Luisa, these intrusive thoughts aren’t just a passing notion. They become an obsession.

music: slow tempo piano trip-hop

LUISA 

So, as a kid and to this day, I absolutely love House, like the show House. And in this episode, he worked out that this girl who was dying, had swallowed a dishwashing tablet in an attempt to commit suicide.

And in that moment when I watched that scene, I thought “maybe I could do that.”

(Luisa in background repeating “swallow it, you could swallow that, swallow them”)

And that idea was so distressing because I wasn’t wanting to die. But I was constantly afraid from that moment onwards that I would somehow be uncontrollable and swallow a dishwashing tablet. And that was such a distressing and disturbing experience as a 12-year-old girl.

NARRATION

Even from this first intrusive thought, Luisa kept what was happening to herself.

LUISA

No matter what intrusive thought I had, I just knew that they were so scary. And the level of shame and guilt that I felt from those, they were just such a big motivator for me to keep it under wraps. I probably spent hours a day doing everything humanly possible to make sure that nobody suspected that anything was wrong or anything was going on because I was so concerned that if anyone thought that there was something wrong they would no longer love me or accept me.

EVA 

I didn’t really think anything of it. I knew she was always anxious and she got upset easily or worried about things easily, but no more than what I’d probably ever noticed in other children. Because as a teacher, I see a lot of kids and the way they operate, and nothing raised a flag at that time.

NARRATION

That’s Luisa’s mum, Eva. She’s talking to us from her home in Boyne Island, on the Queensland central coast. It’s where Luisa grew up.

LUISA 

Not a lot of racial diversity at all. Definitely sexual diversity was not spoken about. They were shunned, bullied, etc. Everything you can imagine from a Queensland town. And especially mental health. Everyone knew that people could become sad or depressed or people could have the blues or however that they would refer to it, but openly discussing mental health or the variety of different mental health conditions that people could have. I don’t even know if it was even understood, let alone talked about.

NARRATION

I’m Hannah McElhinney, and this is The Things I’ve Thought.

music: theme (medium tempo hip hop beats with piano)

LUISA 

Every now and then I might open up to a friend about being really preoccupied about something in particular or worried about something, and I’d be met with, not judgement per se, but real confusion.

HANNAH

Did you have any idea you were experiencing OCD as a teenager?

LUISA

Not at all. The intrusive thoughts that I now know are intrusive thoughts, I felt like they were just coming out of nowhere. Like I would just be walking along the street, in the sun or by the beach, be super happy and then all of a sudden, boom…

music: dark, bassy, plodding rhythm

…I’d think something really sick.

One in particular that stands out is I worked at a newsagency throughout the entirety of when I was at high school. And you have your newspapers and if you don’t sell them at the end of the day…

SFX: Stanley knife slicing through newspapers

…you cut the heads off the byline and everything off. And you send them back to the courier or the supplier and you’re reimbursed for the papers you didn’t sell.

And one day it was at the closing time-ish of a shift. And I began to cut up these newspapers. And out of the complete blue I got this thought, “you could cut your coworker right now,”

(Luisa in background repeating “you could cut her, I don’t want to, but I could”)

And that idea, or that intrusive thought, was just so left field it like hit me in the face out of nowhere, and I felt so sick like I was just going to spew everywhere. I had the Stanley knife in my hand and I threw it away from me. And I told my coworker, I don’t feel well I need to go home. I grabbed my stuff and ran out of the store.

And I just think I sobbed when I got home. I just sobbed and sobbed in my room quietly, because I thought that that intrusive idea of me hurting my coworker indicated that that is something I really wanted to do.

NARRATION

This is the real cooked part about not knowing you have OCD. It’s not just that the thoughts are disturbing, but without understanding that they’re symptomatic of a mental health issue, you start to wonder what the thoughts say about who you are, and what you’re capable of.

LUISA

In my brain, every time I would think something disturbing or have a mental image that was shocking, I would think to myself, “normal people don’t think like this. The only types of people that could possibly even think these things or see these things are evil.”

NARRATION

Luisa developed a pattern of behaviour to help deal with the anxiety caused by these intrusive thoughts. She would often avoid the situations or places or people that related to her thoughts, and she also engaged in some self-talk.

LUISA

You don’t want to do that. That’s not you. That’s not you. That’s not you…

(Luisa in background repeating “that’s not you”)

Or maybe stop, stop, stop, stop…

(Luisa in background repeating “stop”)

Enough, enough enough…

(Luisa in background repeating “enough”)

And just like repeating those words over and over and over again.

(Luisa in background repeating “that’s not you, enough, stop, that’s not true”)

I guess as a way to kind of reset my brain – I guess I was trying to figure out some kind of way of bringing myself back down to reality and explain to myself or tell myself that, “you know who you are. Like you would never want to hurt another person, you would never want to do this. These thoughts are just yucky and random and you don’t want them.”

NARRATION

The thoughts that Luisa and others with OCD obsess over can not only be disturbing, but often completely random, irrational and close to impossible.

music: slow funky bass

LUISA 

Another time I was about 16 and a half maybe. And I had convinced myself that there was a possibility I had contracted HIV. I had had absolutely zero sexual contact with anybody. I had not engaged in drug use of any kind. So there was no, no justifiable reason as to why I could have contracted HIV.

But yet I went through every scenario in which I had been touched by another person, shared a cup with somebody, somebody had been in my bathroom. Any possible way that anybody else could have come into contact with me. I went through the possibility that they themselves could have HIV and that they had accidentally given me HIV. And that from there, through having HIV, and through sharing a bathroom with my whole family, I had now given my entire family HIV.

That was really really fucked.

EVA 

It was a real thing for her that for some reason, the facts of how you can contract it and how you can spread it wasn’t gelling with what was going on in her head. So the story she had in her head wasn’t reasonable or sensible and no amount of reassuring her helped.

LUISA 

But the hard thing too is there’d be some days where I’d be like, “that’s ridiculous. Not logical. You don’t have HIV, your family do not have HIV, you have not given your entire community HIV. That is not how HIV works.” (laughs)

HANNAH

Break to laugh at you giving an entire mining town HIV.

LUISA 

It’s just so funny looking back on it now I’m thinking “Jesus Christ, so cooked”. But in the moment it felt so real. I felt all of it. I felt like I was drowning in guilt and distress every day.

NARRATION

Even though there was no plausible way Luisa could have contracted HIV, she still searched for proof that she had.

LUISA

I would Google symptoms, like what are some telltale signs of HIV? And it would be, you know, really kind of stigmatising photos of individuals who have experienced HIV or AIDS: lesions, muscle waste, those sorts of things.

And again, it’s Queensland, it’s hot, it’s summer, humid, you’d get rashes, you get heat rashes or mozzie bites, those are just kind of your life there. But any of those sorts of things that in the past I could acknowledge as being a mosquito bite or a heat rash, I would interpret as supporting evidence that I was getting skin lesions from having HIV.

NARRATION

This went on for twelve months. And in this time Luisa had begun checking her body all over for these lesions. It wasn’t just noticeable mosquito bites that worried her. It was the idea of all the marks that she could have missed the last time she looked, and which might just reveal themselves if she only checked again.

LUISA 

And it wasn’t until I moved to Melbourne I was like, “okay, well, probably time you go get tested for HIV before you start hanging out with boys and being a grown lady. You better get yourself tested so you don’t hurt anybody.”

I went to a doctor. I was very distressed going in there. I had to explain to them, “I promise, I promise you: I’ve never had sex. I’ve never engaged in any sexual behaviour. I have never done drugs, but I’m worried I have HIV.” And the level of confusion that this doctor had on his face… it really fuelled that level of guilt and shame I was feeling.

NARRATION

I also often have intrusive thoughts that are health-related. I’ll tune in to the slightest bodily twinge. I’ll Google, I’ll monitor myself daily. I’m driven by this perpetual “what if?” The only real thing that helps is going to a doctor to get an all clear. But then the fact that I went to a professional validates the thoughts, as if I was right to be concerned, and ultimately reinforces an expensive and time-consuming doctors visit as the only way to get a break from the anxiety.

So the doctor will tell me I can’t possibly have the bubonic plague, a genuine fear I’ve had, or leukemia, also genuine, or conjunctivitis, a regular one. And the fear will go. But it just comes back a few days later, in a different costume, as a different ailment.

LUISA

I got my results – negative for everything, obviously. And then I was able to let it go, I was able to finally understand like, “yes, I’ve been worrying for over a year about HIV.”

HANNAH

And you’re HI-Free.

LUISA

And I’m HIV-free.

Two days after that intrusive thought left about me having HIV, a new one sprung up. It’s like whack a mole.

music: funky trip hop

NARRATION

So those checks that Luisa would do for lesions (and I’ve done looking for signs of the plague) they can help reduce the anxiety, and provide a bit of a relief from the distress of the intrusive thought. But they quickly become a compulsion.

Welcome to the C in OCD.

LUISA 

The fears and the obsessions that you have, at least for me, the likelihood of them happening or the truth behind them isn’t real. But the “what if?” “What if this could happen? What if I could do this? What if this does happen to me?” It’s such a driving motivator to the point where the compulsions that I engage in are the only way that I learned to reduce that anxiety, because the obsessions – the kind of distress that they would cause me – it was like I was having a meltdown.

NARRATION

It can get to the stage where the compulsive behaviour not only reduces the distress, but becomes absolutely crucial in preventing the thought from becoming reality.

LUISA 

You know, somebody compulsively washing their hands, they can’t stand not having their hands clean: what might be going on in their brain is “if I don’t wash my hands, I’m going to spread the bubonic plague everywhere.” Like, it’s that level of distress, that’s what fuels these compulsions.

HANNAH

I mean, there is a logic to it that no one ever, ever sees. It’s kind of, you know, if you see people acting in a certain way, and then realise it’s because there’s a burning building, you go, “oh, that makes perfect sense.” It’s the same for people with OCD. It’s just the burning building is in someone’s head.

LUISA

That’s a really good way of describing it. That’s exactly right.

NARRATION

And despite the fact that we might have seen Jack Nicholson in As Good As It Gets demand that others maintain his ordered life, or we watch Girls and see Lena Dunham engage in repetitive actions with her parents in a restaurant, compulsive behaviour isn’t always visible to others.

But when Luisa moved to Melbourne after high school and her mental health declined, people began to notice.

music: up-tempo trip hop

Luisa was only 17, and the course she had moved for – performing arts – didn’t turn out the way she had hoped. So she dropped out, and stayed in Melbourne, but she felt isolated, without friends and with nothing to do. Plus, her living situation was not ideal.

EVA 

And she moved into a flat in Toorak. Beautiful area – probably the world’s worst flat.

LUISA

The place didn’t lock correctly, and it was really dank like really musky.

EVA

And there was not a lot of natural light, and she got worse.

LUISA

I do think it was because of the OCD. I think the level of just being in a constant state of anxiety and disgust. And my mum came down to stay. And I think she knew then that my mental health was really quite poor.

EVA

She really did spiral into a depression. She was very sad and she really didn’t have any social outlets, which I found very difficult because I worried for her very much.

NARRATION

And as Luisa’s stress levels rose and her mental health declined, the need to engage in compulsive behaviours to keep the intrusive thoughts at bay grew stronger.

LUISA  

So I used to work in a luggage store on Chapel Street. And the lock that was for the front door of my workplace, it was a bit sticky every now and then. But eventually, I started to worry that I wasn’t locking it correctly.

NARRATION

In Luisa’s mind, a failure to properly lock the door would have dire consequences for her work. The store would be broken into, and stuff would get stolen or destroyed, or there’d be a fire and everyone in the neighbouring buildings would be killed and Luisa would go to jail.

(Luisa in background repeating “the store could be broken into, there could be a fire, people will die, the stock could be stolen”)

LUISA

And this carried on and escalated for months. To the point where I would spend about 20 minutes locking, re-locking, locking, re-locking after my shift would finish.

(Luisa in background repeating “lock it, re-lock it”)

SFX: key repeatedly turning in lock

And then I’d get home and it might be after dinner, seven o’clock at night, eight o’clock at night, nine o’clock at night, and I would think, “I can’t remember locking the door.” And then I would have a meltdown.

(Luisa in background repeating “the store could be broken into, you’ll go to jail, you’ll have to live with this forever, there could be a fire, people will die, the stock could be stolen”)

And I would get in a taxi or an Uber, the quickest way I could get there, and make sure I locked that front door.

(Luisa in background repeating “lock it, re-lock it”)

SFX: key repeatedly turning in lock

I would have to do it. I could not do anything else. Couldn’t eat, couldn’t sleep, nothing until I checked that door.

And then one afternoon I was locking and re-locking it so many times…

(Luisa in background repeating “lock it, re-lock it”)

SFX: key repeatedly turning in lock

And then all of a sudden, I heard cackling. Like the loudest laugh I swear I ever heard in my life. And I turned around, because it was just out of the blue, and I saw two tradesmen. They were either getting out of their truck or just walking by and they were looking at me laughing. And I realised that they were laughing at me doing this locking ritual to the door.

And it was just mortifying, like… (crying) there were no real words to describe how bad I felt. But also I could really take myself objectively out of it and see, this is really weird. Something really weird is happening and I don’t know why I’m doing this.

NARRATION

As she often did, Luisa called Eva. She told her what had happened and her mum encouraged her to seek help.

EVA 

So it was about talking to her about “well, you need to talk to someone, Luisa.” “Aw, no, it’s okay. I’ll be all right.” “No. You know, this is not normal. This is not okay. You need to talk to someone. Go to see a doctor, you can talk to a doctor. They won’t tell anyone anything.”

NARRATION

But before she did, Luisa decided to Google it.

SFX: keyboard tapping and mouse clicking

She typed “unwanted thoughts about stabbing”, and “unwanted thoughts about diseases” and every other intrusive thought she could remember having.

LUISA

And no matter what I searched, from what I had experienced, every single web page were links for obsessive compulsive disorder. And I was like “what?” I’m like, “my room’s a pigsty and I don’t need to compulsively wash my hands, and I definitely don’t care about things being neat or in order. I don’t have OCD.”

NARRATION

Then she would click through to the pages, and everything she read mirrored her experiences since 12-year-old Luisa had sat down to watch House MD.

LUISA 

I felt like a sense of relief, but also a sense of fear. Like, “if it’s not OCD, then I am evil. It’s either OCD, or I’m a monster. And I need to be locked away and protected from other people.”

NARRATION

So Luisa went to a GP, who gave her a referral to a psychiatrist. And on her first visit, she offloaded.

LUISA 

And then yeah, I told the psychiatrist everything that had occurred in the last 10 years, every intrusive thought, everything. And at the end of it she said, “yeah, that sounds like OCD.” And we went through this checklist.

NARRATION

The checklist is a short screening questionnaire that asks whether a person is overly concerned with things like contamination, or death and destruction, or feels the need to repeat an action over and over again. Luisa answered yes to like 80% of it.

HANNAH 

And how did that feel to finally have that diagnosis?

LUISA

It was probably one of the best days of my life. Once I understood or I could begin the process of understanding that everything that I was thinking, or every intrusive thought that I had was because of a mental health disorder rather than because of something intrinsically evil about me, it really shifted my ability from something negative to something positive. Like I was finally able to start treating myself with respect and start loving myself and build my self-worth. Because that’s very, very difficult to do when you’ve constantly got these thoughts in your head that suggest to you that you’re evil and disgusting and a monster. So that was an amazing time for me, being diagnosed.

music: hopeful, ethereal pop

EVA  

So when she told me that she was diagnosed with OCD, I was really sad for her… I was relieved, you know, relieved that she had a pathway forward.

The fact that she has OCD, you know, I suffer with guilt, I suppose. Parents’ guilt, my own guilt. The “could I have done more? Could I have done less?” Or you know, “could I have been there? Should I have refused to let her go to Melbourne? Would’ve it been different?”

NARRATION

Like with many mental illnesses, once a diagnosis was received, targeted treatment could begin for Luisa.

LUISA  

Because of the amount of distress that was so evident for my psychiatrist, she said that just to help me calm down and start the process of like, just feeling better, it would be good to go on an SSRI. So that’s a selective serotonin re-uptake inhibitor. And they’re very, very, very good for people who have OCD usually.

And for as long as I took that SSRI, that anxiety didn’t return. That just inherent baseline distress, just never returned.

And then slowly but surely I decided to open up to those around me – friends, family. And the first time I told a friend, I was so nervous. I thought that… like I went into that conversation with them accepting that I may not have that friend any longer after that.

music: upbeat R’n’B

And they were just wonderful, fully supportive. Like, it wasn’t a dismissal.But it was just kind of confusion from their part as to why I would anticipate them to leave. And that was really comforting.

That level of internalised shame and guilt, I no longer experience it to that level at all. Because again, every single person that I’ve opened up to about it, I don’t feel judged by. They’re curious about it, they want to listen to you, they want to be there for you. And that’s not something I ever anticipated receiving. So it’s been really amazing.

NARRATION

After coming off the medication, Luisa decided to use some of the additional supports available to her.

LUISA 

I decided to go see a counsellor at the Swinburne psychological clinic. And she’s wonderful. And I told her that I had OCD. I opened up to her about everything. And I said, “I was on medication for a long time, but you know, I’m just finding that a bit of it’s creeping back, and it’s becoming a little bit more unmanageable now. But I don’t want to go back on medication. What do you think we should do?” And she said, “mindfulness is a really wonderful tool and we should give it a go.”

And the mindfulness that I would engage with, and still do…

SFX: a small flowing stream

…you envision a tree and you see the leaves floating down into a stream. And all of the leaves just go by in the stream. And every time you have an intrusive thought, you place that on a leaf, and you watch it go by on the stream until you can’t see it anymore.

I find that really, really calming and grounding because it means that when I feel that an intrusive thought is sticking around, or I just can’t let it go, that exercise allows me to physically place it somewhere on this metaphorical leaf image that I have, and watch it go by, and I watch it leave. And then if it comes back, I just place it on another leaf.

And if anything does come into your head, you don’t judge it, you don’t associate any meaning to it. You just place it on the leaf and watch it go by.

NARRATION

Luisa is also getting ready to try out a new therapeutic technique with her psychologist. It’s called exposure response prevention. Luisa will be encouraged to sit with her obsessive fears and not give into the compulsions to alleviate them.

LUISA 

Basically, the aim of it – as far as what I’m understanding as well – is that over time you want to learn how to be with the anxiety and the intrusive thoughts without engaging in the compulsions.

How it will work with me is I’ll have an intrusive thought, and quite often my compulsion might be checking. Instead of engaging in the compulsion of checking, my goal is to have the intrusive thought and the desire to check, and not check. And the result of me not checking is a flood wave of anxiety, stress, sometimes distress. And I have to do my best to kind of just remain in that for as long as possible, because you can’t be in that state forever. It will eventually… it’s like a wave, like it will eventually crash and subside.

music: hopeful, slow, chromatic pop

NARRATION

Ultimately for Luisa, the one constant in her life has been the support of those around her, especially her mum, Eva. Though Luisa kept those who loved her in the dark for so long about what was going on inside her head, they were there standing by, always wanting the best for her. So that anytime she fell, they were already there holding a net. And when she was ready to open up, they were by her side ready to listen.

EVA 

I always wanted a daughter. I’m not going to do anything ever to lose that relationship with her. So, yeah, and there’s nothing she can do to change that either. So it’s, you know, that’s what I keep telling her every single time I talk to her – is that I’m always proud of her and no matter what she does, that’s not going to change that.

LUISA 

Everybody that I’ve chosen to open up to about it – friends and family – have been extremely supportive. They love you and they want you to be happy and to feel calm. And part of that is quite often knowing who you are. And the unconditional support that I have felt from them, has probably been one of the best things that I’ve experienced.

music: show theme

NARRATION

Massive thanks to Luisa for sharing her story. She’s super brave, self-aware and smart. Thanks also to Eva for sharing her perspective and experience.

If you struggle with anxiety, there’s a whole bunch of help out there.

If you’re in need of urgent assistance, contact 000, Lifeline on 131 114, or the Suicide Help Line on 1300 651 251.

At Swinburne, students can access a GP, and a team of mental health clinicians, psychiatrists and clinical psychologists. Call 9214 8483 to learn more and book a free appointment.

There’s also an after-hours crisis phone service that Swinburne run that is available every day of the year, even weekends and public holidays, 5pm to 9am. Call 1300 854 144 or SMS 0488 884 145.

We’ll chuck all this info into the show notes.

You may also like to go and do something nice for yourself, like go to a movie, grab some good sushi or do some pilates.

If you or someone you know is in need of help, please reach out. There are no stronger people out there than those that can put up their hand and say they need help.

Okay, that’s it. Brains are weird, there’s no such thing as a normal one.

The Things I’ve Thought is a Swinburne University of Technology initiative, produced by Sam Loy and me, Hannah McElhinney, with sound design and mixing by Tiffany Dimmack, and executive produced by Clare Monte, May Ling Yong, Douglas Pope, and Kate Montague. Additional recording for this story by Chris Davies.

Special thanks to Jonathan Lang in the Swinburne media department, and Jess O’Callaghan.

NEXT EPISODE PROMO:

NARRATION

On the next episode of The Things I’ve Thought…

music: screeching heavy metal guitar

ADRIAN

I would take a bottle of whiskey with me to school.

NARRATION

Sometimes the things I’ve thought are just memories of all the things I’d rather forget.

ADRIAN

I didn’t have any money coming down here too. I found Brisbane Square, and I kinda went there, and I laid down and went to sleep. And I kept doing that. I kept doing for about 12 to 18 months.

music: theme fades in

NARRATION

From Swinburne University of Technology, a story about homelessness, drug abuse, and finding your place in the world.

The Things I’ve Thought, exploring how our minds sometimes try to sabotage us, why it happens, and what to do if yours does. Available wherever you get your podcasts.