"I’m never free" – Sandra Pritchard
Airdate: 
Tuesday, August 26, 2014 - 20:30
Channel: 
SBS

Some days it can take Sandra Pritchard more than 10 minutes to make a cup of tea. The cup isn’t quite right. The tea bag doesn’t go in properly. Sometimes, after more than a dozen attempts, she simply gives up.

Sandra has Obsessive Compulsive Disorder.

The mum of two is consumed by her illness. She compulsively rearranges, sorts, washes, rinses, checks, touches, wipes.

Around three per cent of Australians experience OCD in their lifetime, according to the Australian Bureau of Statistics.

And you can’t be "a little bit OCD". The real thing is debilitating.

So when does an obsession cross the line? What distinguishes a passionate, driving obsession from something more serious?

Join the discussion by using the #insightsbs hashtag on Twitter, posting on our Facebook page

Transcript

JENNY BROCKIE: Welcome everybody, good to have you with us here tonight. Glad you could join us. Joffa, I want to start with you, you're a diehard fan of the Collingwood AFL team. How many hours a day do you spend thinking about Collingwood?

 

JOFFA CORFE: Oh, it would be multiple times per hour thinking about Collingwood. Oh, yeah, it's, absolutely, wake up, go to bed, during the day, conversation with people, arguments with people. More times that what the average male would think about sex.

JENNY BROCKIE: You would think about Collingwood?

 

JOFFA CORFE: Absolutely.

 

JENNY BROCKIE: Wow. Where does the footy club sit in terms of priorities? Compared to say your family and your kids?

 

JOFFA CORFE: Well, now I don't want people to lynch me after I say this but it would be level pegging with family, Collingwood family, family Collingwood, but let me tell you at the MCG on grand final day, if Collingwood was storming home in the last quarter towards a premiership, it would be Collingwood. The family, go away, come back when this is done, come back when I'm celebrating a premiership.

 

JENNY BROCKIE: So if say one of your kids was born on the day of a grand final, I'm being quite serious here, right?

JOFFA CORFE: Yes.

 

JENNY BROCKIE: Say one of your kids was born the day of a grand final - where would you be?

 

JOFFA CORFE: Oh at the grand final. This is a small moment of time that would give me so much pleasure. The child will be around 70, 80 years.

 

JENNY BROCKIE: Do you think it's an obsession?

 

JOFFA CORFE: No, to me it's being normal. People say oh, there's that Joffa bloke, he's obsessed with Collingwood and that real annoys me because I don't consider myself being obsessed. I consider myself being a normal Collingwood supporter. And people laugh because they don't understand. How can you understand passion if you are not passionate about anything yourself?

 

JENNY BROCKIE: Ilona, you're worried that you're too obsessed with work. Plenty of people work long hours. What do you think you were doing that went beyond that that caused you to worry?

 

ILONA MASCHETTA: I couldn't stop, I couldn't stop. The wanting to stop and then realising I couldn't stop, feeling compelled that I had to keep going, that was when I started to realise that it was a problem and that I wasn't just working too hard, I had become obsessed with work.

 

JENNY BROCKIE: Daniel, you're the partner?

 

DANIEL PHILLIPS: I am, unfortunately.

 

JENNY BROCKIE: What was it like for you?

 

DANIEL PHILLIPS: No. I think she never realised for a long time. I brought it up with her for months on end and I think we got to a point where I said if you don't leave the house today I'm going to take you out on the patio and I'm going to hose you down. And she looked, she's in pyjamas, she hadn't changed in two days, she's working fourteen hours day and she's like how did it get like this?

 

JENNY BROCKIE: You know, you've talked about it Ilona as feeling like you were developing some sort of illness?

 

ILONA MASCHETTA: Yeah, absolutely, when I realised I did actually - I started saying to people, and it may have come across as joke but I was being quite serious, I've developed a mental illness.

 

JENNY BROCKIE: Daniel, has she changed?

 

DANIEL PHILLIPS: Yeah, in the last couple of week, I think she's came to the realisation that yes, I was spending too much time on it and she's kind of looked back and since she's seen that there's been a light at the end of the tunnel and now she's got something to work towards.

 

JENNY BROCKIE: Jessica Grisham, when do you think obsession becomes a problem in terms of people's health and wellbeing?

 

JESSICA GRISHAM, UNIVERSITY OF NEW SOUTH WALES: Well there's several factors, I think you touched on one of them in your questioning which is when does it start interfering with other things you want to do in your life and when do other people think it's interfering with your relationships and your work? Because sometimes someone in the throes of an obsession don't realise it themselves and you have to ask the friends and family is this really going getting in the way?

So whereas some of the people are describing passions where they're positive, exciting parts of their identity, other people experience repetitive intrusive thoughts that they don't feel are part of them, that seem really different from who they are.

 

JENNY BROCKIE: Chris Gale, you're a psychiatrist, you research treatments for anxiety and mood disorders. When do you think obsession with something becomes a health problem?

 

DR CHRIS GALE, UNIVERSITY OF OTAGO: When it becomes, starts ruining people's lives. If you've got thoughts which make you very passionate, you're very concerned, you're very much part of your identity, even if they're taking over a fair amount your life, that's not an obsession. But when it's unwanted, it's intrusive, it's often repulsive, that is when it becomes an obsession.

 

JENNY BROCKIE: Okay, yes?

 

JOCASTA GILES: I have medically diagnosed treated OCD and I'm also a lawyer and I, my OCD manifests itself in checking things. So I have been known to talk back home from the bus stop or train station to check everything's off and the thing I have struggled with, and I was interested in, sorry, is that Ilona?

 

JENNY BROCKIE: Ilona, yes.

 

JOCASTA GILES: When you were talking about work, in my profession it's so easy to justify that behaviour because it makes me very good at my job and you know, there's a certain, to a certain extent it's required as part of my profession that you need to obsessively check things. But for me the point at which I went to seek help and was diagnosed was when I realised it was debilitating. It was taking me half an hour to leave my house, it was taking me half an hour to leave my office and people started noticing I wasn't paying attention when they were speaking to me because I was thinking, oh I did put that original document too close to the edge of my desk. What if it falls into the bin?

JENNY BROCKIE: Yes.

 

PROFESSOR DENNIS VELAKOULIS, ROYAL MELBOURNE HOSPITAL: There is another perspective to this, I think and many - well, I wouldn't call them obsessions, the work-related issues, but the perspective is there are many behaviours like this which are culturally approved of. Work is one of them. Artists, writers, would often go into states like that. But it is functional. Sportsmen, marathon runners, tennis players, they are culturally sanctioned.

 

JENNY BROCKIE: And what do you regard as functional, how do you define functional?

 

 

PROFESSOR DENNIS VELAKOULIS: They are not distressed by it, it serves a purpose and they are not distressed but the relationships can still suffer for those people, because their passionate about what they are doing.

 

JENNY BROCKIE: Lucie, you say that people close to you sometimes say they think you have obsessive compulsive disorder, let’s have a look at some of the things you do.

 

 

LUCIE’S VIDEO PLAYED.

 

 

LUCIE SWINKELS: I take everything out to the washing line, making sure all the pegs are the same colour on the same line. The last three lines are white pegs, then I have blue ones and then red. Sometimes my husband will help me. He might change the pegs into a different colour, and on the wrong line. So, that sometimes frustrates me a bit, so I pick certain days of the week that I know he's not going to be there.

 

When I am doing my dishes, I like to start on the right-hand side. I really like to have new things and things that match, because all my sponges are the same colours and all nice and new as well, so I replace them quite frequently.

 

All my cutlery, they are all matching, there isn't odd spoons or things like that. We have some odd things. My husband likes to keep them for sentimental reasons, so I make sure they are on the top shelf so they are not affecting the way that everything else looks.

 

I have a really particular order that I use for doing my shopping list. So, I write all my ingredients and I separate them into - well, parts of the shop I get them from. I might try and write it again, so that it can be a bit neater and I have got a small little template I keep with me to kind of guide me on the size of my writing and how I form my letters and how neat it is.

 

 

JENNY BROCKIE: Lucie, why do you do those things?

 

 

LUCIE SWINKELS: I think mostly it makes me feel at ease when things are in order so I really like the appearance of the way things are. Usually things will start as something that's functional, it will be the quickest way to do something or the easiest way to do something, and then once I really like that pattern, I want to continue doing it the same way.

 

JENNY BROCKIE: And how are you when that's interrupted or interfered with?

 

LUCIE SWINKELS: Um, I do like to change things if they're, if someone's done something for me in the wrong way, I will go back and change them and like after they've done something, but if people are doing intentionally to see my reaction I'll be able to leave it. So it will stress me out a bit but I can cope with not changing things.

 

JENNY BROCKIE: Reuben, you're looking like you're one of those people who actually, you're Lucie's husband?

 

REUBEN SWINKELS: Yes.

 

JENNY BROCKIE: You're looking you're like you're one of those people who interferes with this, do you do that?

 

REUBEN SWINKELS: On the odd occasion, yeah.

 

JENNY BROCKIE: So how do you feel about what she does? What's it like to live with?

REUBEN SWINKELS: To be honest, if you don't know you wouldn't really notice. It just looks like a neat, tidy house.

 

JENNY BROCKIE: And Lucie, do you have any sense of what would happen if you didn't do it? Like is there any fear about what would happen if you didn't do it that way?

 

LUCIE SWINKELS: Oh, no, not at all. It's just purely for cleanliness reasons. So I can happily sleep at night if something's not in the same spot.

 

JENNY BROCKIE: So if somebody does put it around the wrong way can you leave it?

 

LUCIE SWINKELS: Yeah, I can leave it. I prefer not to, but I can leave it.

 

JENNY BROCKIE: So you can compromise?

 

LUCIE SWINKELS: Yes.

 

JENNY BROCKIE: And how do you feel when your family and friends say they think you've got an obsessive compulsive disorder?

 

LUCIE SWINKELS: I mostly brush it off because I realise that I'm not and it's just something about my personality and, yeah, I've worked with people before that have had obsessive compulsive disorder and realised how much it can impact on people's lives, so I feel at ease when they say that and I just brush it off.

 

JENNY BROCKIE: Scott Draper, you are a former tennis and golf professional. Winner of the Australian Open mixed doubles title, I think, weren't you?

 

SCOTT DRAPER: Yes.

 

JENNY BROCKIE: In 2005.

 

SCOTT DRAPER: Yep.

 

JENNY BROCKIE: You say you have obsessive compulsive disorder. What things would you do when it was at its worst?

 

SCOTT DRAPER: Well I had it, I'm 40 now and I had it when I was in my late teens, for me it got to a point where it was taking me three hoursish to get to bed every night. I felt like the end of the day was the time for closure so I could sort of get through the day but at the end of the day was where I really had to get to bed with this kind of ritual where everything had a place, an order, and then every object I'd have to have a certain place in the room. Because I played tennis I was travelling, staying with people's families, what not, so you know, new environments, what not, where I had to sort of try and do it without them knowing, but trying to find that balance which is very tricky.

 

JENNY BROCKIE: Can you describe what kinds of thing you were doing?

 

SCOTT DRAPER: There was a geometry to everything, you know, whether it was a round object or it was square, rectangular, I'd find a way to make it, you know, it was making sense in my mind. And then I'd"¦

 

JENNY BROCKIE: So what kind of, you mean sense about where you put it, like symmetry?

 

SCOTT DRAPER: All symmetry, yeah, with - and it could be distances from walls, on desks, you know, in terms of space in the room, it was all sorts of things and once I was happy with that object then I'd touch it three times and then typically I would never get it right in terms of that touch. The pressure in which I touched it had to be right and then I'd have multiples of threes. I'd have to go three, nine, 27, in between each one I'd have cleansing touches, always to the right.

 

JENNY BROCKIE: What's a cleansing touch?

 

SCOTT DRAPER: Don't ask me, it was the first three was like, you know, not happy with it so cleansing touch like okay, let's start again, 1, 2, 3, cleansing, keep going.

 

JENNY BROCKIE: And when you were doing it, sorry for interrupting, when you were doing this, what were you thinking would happen if you didn't do it?

 

SCOTT DRAPER: Um, yeah, there was definitely a connection for me with religion. So I went to Sunday school, believed in, you know, God and I guess the retribution of doing the wrong thing, which has since changed but at the time, yeah, very much was thinking that, you know, God would punish me with a sickness, vomiting, whatever if I didn't do things correctly.

 

JENNY BROCKIE: So you actually imagined getting sick if you didn't touch things three times or"¦

 

SCOTT DRAPER: Yeah, it started very simply in terms of making my bed, had to be done perfectly, and if I didn't do it perfectly then I'd be punished and then that would just exacerbate into everything. So I couldn't fixate long enough. It was just reducing that anxiety all the time.

 

JENNY BROCKIE: So when did it start? How old were you when it started?

 

SCOTT DRAPER: It was into 18th, 19th kind of year, I don't actually remember exactly. It was 18, 19 and I remember the day it happened, or it started to happen, and the momentum it gathered was extraordinary.

 

JENNY BROCKIE: How quickly?

 

SCOTT DRAPER: Um, so to just making my bed correctly for the first day, I'd say within a month it became every part of my life at the end of day. Nine months is when it went from when it went from making the bed to doing the triple jump to get to bed.

 

JENNY BROCKIE: Did you know it was irrational?

 

SCOTT DRAPER: Absolutely, yeah and I concealed it with my family, so no one knew about it, no friend, no family member knew about it.

 

JENNY BROCKIE: You were playing tennis at the time?

 

SCOTT DRAPER: I was playing tennis at the time, yeah, and I travelled in the Australian teams and Junior Wimbledon all that kind of stuff, and the way I'd get away with it in public was rather than touch things I would hold objects and I'd count in my head and that was the way of sort of not allowing people to know that I was struggling with something. And it was in my own time at night so there was definitely a privacy to it. And yeah, I knew it was crazy.

 

JENNY BROCKIE: Did you seek any help for it?

 

SCOTT DRAPER: No. No, I was able to, you know, I think luckily I was able to go cold turkey on it. I was so distressed where I was at and it was sort of really bothering me that I just had this, this thing had control of me and I didn't know what it was called at the time, I just knew I wasn't going so well and I went to bed that night and I made a date about two weeks in advance, I had to go and play a tournament, I'd just got my licence and I sort of said in my head when my front wheels leave my mum and dad's driveway I will never do this again.

 

And I think that the obsession and the compulsion and the things that I was doing, I actually got to a point where I didn't care what anyone was going to do to me so I'd had a gutful and I just made this pact in my head that there was no way I was going to not stop this. And it took me probably a while to, to really break free of that demon inside. But the freedom, the first night because I achieved my goal of not doing this and I had to start swiping things and the freedom of going to bed that night in five minutes, having a shower, you know was just extraordinary. So there was a real reward, you know, for breaking this cycle.

 

 

JENNY BROCKIE: How hard was it to stop though?

 

 

SCOTT DRAPER: It was extremely hard but at the same time, one thing that's for sure in my life, whenever I've said I'm going to do something, I've done it. And it was, I was going do this, I was going to stop it.

 

 

JENNY BROCKIE: Sandra, you were diagnosed with obsessive compulsive disorder two years ago. Just tell us broadly how much it dominates your life?

 

SANDRA PRITCHARD: It's a part of every single activity I do, day in, day out. I'm never, I'm never free it. So it doesn't, a lot of people kind of, if you tell someone I've got the OCD, the first thing that you'll be asked is oh what kind of things do you do and people always get excited about hearing every weird little thing you do but it's become so entrenched in my life that there is pretty much nothing that I do the normal way.

 

JENNY BROCKIE: We've got some footage of you trying to make a cup of tea and I want to talk with you as we watch that because it's just a little mini example of the kind of thing that you go through. Tell me what's going on here.

SANDRA PRITCHARD: I examine the teabags and I know in my head I'm trying to say, look there's nothing wrong with this tea bag, it's fine, but if I don't pick it up in the right way or if it pick it up and I examine it and it look like there's something in it I don't even know what I'm looking for to be honest. I just know that to me I'm worried that it's contaminated or there's something wrong with it. So I just "¦

 

JENNY BROCKIE: So you're worried about getting sick if you have it?

 

SANDRA PRITCHARD: Yeah, sick, I'm so concerned that there's something wrong with it and I can't 100 percent say that there's not, so I put it, I put it away and just try again.

 

JENNY BROCKIE: And you're so tentative doing this, look at you? You're really"¦

 

SANDRA PRITCHARD: I slow things down, that's the only way that I can go get through things is to slow it down just so can I be absolutely certain and in my head I'm sort of saying okay, I'm picking it up, it's totally fine, I'm picking it up, nothing's touched it.

 

JENNY BROCKIE: And again with the sugar, you're checking, you know, it's not coming out quite right?

 

SANDRA PRITCHARD: I have trouble with sugar because it looks so much like broken glass and I'm obsessed, I think that there's glass in everything and I don't exactly know why but I just - it's almost like a play of the eye, a light comes into through the window.

 

JENNY BROCKIE: You're throwing it out, right?

 

SANDRA PRITCHARD: Yeah, by this stage the more that I do it, the more upset I get and I know.

 

JENNY BROCKIE: And you're starting to clean that cup again, even though it's clean?

 

SANDRA PRITCHARD: And I know it's clean but I'm just, because I need to start the whole process again, I just need to clean it and just try and forget about everything else that I've already done.

 

JENNY BROCKIE: You look to me there like you are struggling in your mind with what you're doing. Is that what's going on?

 

SANDRA PRITCHARD: I did because I don't want to do it and I'm trying to stop. I know that the cup is clean, the spoon is fine, there is no glass because I haven't, nothing's broken, I know all those things but I just, the urge that I get to just, to do it again because there's that chance I may not be safe. I may not, there may be something wrong with the tea bag, there may be something in the cup. Is this safe for me and I either kind of give it a green light and go yes, it's totally safe, or I kind of go oh, no, and I have a choice I either avoid it, which is what I prefer to do or I do some sort of ritual.

 

JENNY BROCKIE: So you do this with other things like getting dressed in the morning. How long does it take you to get ready?

 

SANDRA PRITCHARD: When I'm forced to get dressed it takes me probably only about two to three minutes per item of clothing and I check everything. I haven't worn, apart from today I haven't worn a pair of socks for God, I couldn't even tell you the last time I wore a pair of socks because I can't - any time I don't have to check it just drives me bananas.

 

JENNY BROCKIE: What are your checking for?

 

SANDRA PRITCHARD: I'm checking for spiders mainly because they sometimes come in on the washing and I've seen it and as soon as I see that they do come in on the washing, I have to check. I cannot put on an item of clothing without checking because the time I don't do it, then I'll get bitten and I'll die because it will be a - you know, I just jump to the worst possible conclusion. I just, I just am so afraid that there's something in my clothes that I just, I have to check and if anything interrupts me while I'm checking I have to start again, which is why it takes so long.

 

JENNY BROCKIE: It's an extraordinarily difficult way to live a life, isn't it?

 

SANDRA PRITCHARD: It is, it is but I'm used to it, to a point. You know, sometimes I look at it and I think that really upsets me and then sometimes I think well, that's just, that's my life. It's always been that way, there's always been something. If it wasn't the tea that I've been doing it, it's something else. There's always something that does it. It's such a huge part that I'm used to it and it's tiring, it's more exhausting to look at.

 

JENNY BROCKIE: How long did it take you to get ready to come here?

 

SANDRA PRITCHARD: Funnily enough not that long. I was speaking to someone before and some of these things, depending on the day, they can, sometimes like I'll be able to make a couple of tea in five minutes. Rarely. But sometimes it takes me say twenty, thirty minutes to get dressed; other times it doesn't bother me at all. So to get ready here it didn't take me that long but I chose a different compulsion to ease my stress level.

 

JENNY BROCKIE: What did you choose?

 

SANDRA PRITCHARD: Um, I chose the one that's most irritating at the moment. I have trouble, that's come out, I have trouble when I go to the toilet. I can't stop cleaning after I go to the toilet.

 

JENNY BROCKIE: And again, what is it that you're fearful of in that situation?

SANDRA PRITCHARD: I feel dirty. Like I'm worried that I'm not clean and then my body's going to get infected and I'll eventually die from it.

 

JENNY BROCKIE: How long has this been going on for you?

 

SANDRA PRITCHARD: I started probably when I was about six or seven, I used to sort things. I used to have a big walk in wardrobe and I used to sort pull all the toys out and then sort them into different categories and then different colours and I remember getting more frustrated because I'd say righto, do it by categories and I'd put all the shop stuff here and all the money here and all that there, and then I'd sort of go oh, that's not good enough. I didn't have a choice; I wasn't doing it deliberately but I just - and it's been on-going and it's been changing, chopping and changing ever since and just gathering steam.

JENNY BROCKIE: So it's getting worse do you think?

 

SANDRA PRITCHARD: Oh, yeah, yeah. A couple of years ago I landed in hospital because I was suicidal. Because I just, you get, there's only so much that you can sit there and go I cannot, I can't do this and one part of your head's going this is probably not sane and another part's going oh, but you've, just once more, just wipe, wipe once more, wash once more, go and check that thing once more. There's so only so much you can do. It's tiring, it's distressing and when I had my kids I just - I wanted so much not for them to have this problem and the help I got, people said it's genetic, you know, your kids might get it and I just can't, I don't want to do that to them. I don't want my kids to have the same problem I have because it takes life from you. And it has, it has taken pretty much everything that I have. It's just consumed everything, it swallows everything to the point where you're just - you're hollow and you just exist and you say what's the point?

 

JENNY BROCKIE: How old are you kids?

 

SANDRA PRITCHARD: I have a five year old and I have a thirteen month old.

 

JENNY BROCKIE: And are there any signs with the five year old?

SANDRA PRITCHARD: She pulls her hair, which I do also, but it's very hard to watch her. She's a very happy kid and she's got friends and I think she's doing well and I'm using what I know to help her. But I see that she, she's going to have a bit of a battle. She's, and that's hard, it's hard to watch something that you just wish you could take it from her. But there's nothing, there's nothing I can do. She's predisposed to it I suppose.

 

JENNY BROCKIE: And you're getting treatment for it?

 

SANDRA PRITCHARD: I am. It's coming to an end though, this week actually.

 

JENNY BROCKIE: Why?

 

SANDRA PRITCHARD: There's some sort of a restructure and they're unable to offer any counselling services or for anxious people. So all the people that are going there because for say panic disorders, OCD, whatever they're going there for have been redistributed to other services.

 

JENNY BROCKIE: So will you try to go somewhere else do you think to get help?

 

SANDRA PRITCHARD: It's being organised but if I was being honest, I probably won't continue from this point on.

JENNY BROCKIE: Why?

 

SANDRA PRITCHARD: It's too distressing to try and start again.

 

JENNY BROCKIE: Justin, you're Sandra's husband, when did you realise she had OCD?

 

JUSTIN PRITCHARD: I didn't really realise it till she was admitted to hospital and I went to therapy with her afterwards. Before that, if I look back I can, yeah, I could see that was an OCD symptom but I didn't know, I was ignorant, and you know, it's something really hard to understand, the irrationality of it.

 

JENNY BROCKIE: So were you hiding it from him?

 

SANDRA PRITCHARD: Yeah, yeah, yeah, it's embarrassing, I don't want him to see it.

 

JUSTIN PRITCHARD: I used to see little things like lists or other things and I intentionally messed around with it and the response I got was so disproportionate to the action. I thought it caused a lot of conflict and where's your sense of humour, and yeah, I"¦

 

JENNY BROCKIE: So you didn't realise it was a disorder?

 

JUSTIN PRITCHARD: Not then, not until she was admitted to hospital.

 

JENNY BROCKIE: Wow. What's it like for you watching that footage?

 

JUSTIN PRITCHARD: It's good for me to watch that because I don't always see it all. I make tea at home and, but yeah, she tries to hide a lot of it from me and especially when the kids are there, they take, they interrupt her rituals as well.

 

JENNY BROCKIE: Sandra, the effort that must have been involved for you in hiding that much, that must have taken a lot of effort?

 

SANDRA PRITCHARD: Yeah, but it's worth it because you don't, it's humiliating when people see. When people notice something's a bit off. I mean.

 

JENNY BROCKIE: So why did you come on television then?

 

SANDRA PRITCHARD: Ah, that's a very good question. I get a lot of misconceptions about what people think OCD is and they say oh, I've got a touch of that or, you know, I have to touch of this twice or I have to, oh I know, it's a bit irritating and I just think no, it's all consuming and there is a difference. You kind of feel like there is someone shoving you towards doing these compulsions and it's such a fight and you can't give it up.

 

JENNY BROCKIE: Jessica, the term OCD is thrown around pretty widely these days. What is it exactly? What is obsessive compulsive disorder?

 

JESSICA GRISHAM: Obsessive compulsive disorder is when you experience obsessions that are interfering, distressing, repugnant, they conflict with your sense of yourself, people experience them as very, very upsetting, and then often times in response people do some time of behaviour or ritual to reduce the anxiety associated with this terrible thought that they are having.

 

JENNY BROCKIE: Chris, what do you think about the way that - the term OCD is used these days?

 

DR CHRIS GALE: Well, OCD has become a little bit fashionable in certain areas. The OCD itself is, as has been described, it is something that is significant and it's severe. Of all the anxiety disorders and about one in 10 people have an anxiety disorder this is the rarest and it's the most disabling anxiety disorder. People who have got OCD often are tremendously challenged in what they are doing. They have huge difficulties in getting on with life. It takes over people's lives. I have seen people who had very good careers, have them destroyed as a consequence of this.

 

JENNY BROCKIE: Can people develop OCD or are they born with it? What do you think, Chris?

 

DR CHRIS GALE: I think it's one of these things that happens to people. I think that there are anxiety disorders - people who have one anxiety tend to get more anxiety disorders, but it's generally happens to people, tends to happen late teenage years, and it tends to go on and off nor most of people's lives. I think it is actually something that the much more neurological and something you have rather than something you develop.

 

 

JENNY BROCKIE: Do you know what causes it?

 

 

DR CHRIS GALE: No. We don't know what causes it? I am going to defer to my colleague.

 

 

PROFESSOR DENNIS VELAKOULIS: So, there are neurological disorders where you can see people developing obsessive compulsive symptoms. So, that tells us that something in parts of the brain can trigger it. For example, people with Parkinson's Disease who are medicated with Parkinson's's medications can develop things that look like OCD. People with Huntington's Disease can develop obsessive or compulsive symptoms which tells us it has - OCD is probably related to what are called subcortical brain structures.

 

I might come back to the obsession because we have heard a lot about what many of us would think is just an extension of normal. But people who have OCD will often have obsessions which are outside the normal. For example, they have recurrent intrusive thoughts or images that are religious or sexual or violent in nature and they are really distressing and really disabling and many of the compulsions are there to try and neutralise those distressing thoughts or images or impulses.

 

 

JENNY BROCKIE: Jessica, what do you think? Do you think people can develop OCD?

 

 

JESSICA GRISHAM: I think there is interpret strong evidence there is a genetic basis for the disorder. People - it tends to run in families, and I agree with my colleagues that relative to some other anxiety disorder there's a reasonably strong building base of evidence about the neurobiological foundations of the disorder.

 

 

JENNY BROCKIE: Ellie, you're 16 and you've been diagnosed with OCD. What's it like for you?

 

ELLIE HANNAN: Um, it's difficult, in a way I don't really know any different. I mean it has just as I've gotten older and it's become more of a problem and there's things that I look back and my parents look back and see that at the time, you know, didn't make them automatically think that's OCD but now that we know what it was"¦

 

JENNY BROCKIE: It all makes sense?

 

ELLIE HANNAN: You know, I remember mum hurting her leg once and I would been have been, it was at our old house so I would have been about three, and dad helping her and I was thinking she's never going to get better. And I said that to dad and he said that's ridiculous, of course she's going to get better, she's just hurt her leg, and I said no, she's not, mum's not meant to get hurt, you know, it's always going to be like this.

 

JENNY BROCKIE: So catastrophising?

 

ELLIE HANNAN: Yes, and I've always catastrophised, I always think, you know, way too far ahead on something.

 

JENNY BROCKIE: It's not so much about what you do, is it, it's about what you think?

 

ELLIE HANNAN: Yeah. One thing that I do almost constantly is I trace things mentally, all the time but more so when I'm nervous, so like tonight these things, it's constant. I've just been tracing them, the more edges there are to something the more relief I get from tracing it and I don't really know what it is.

 

JENNY BROCKIE: When you say tracing it, what do you mean, just literally going with your eyes around it?

 

 

ELLIE HANNAN: Yeah, with my eyes. So like you know, in, up, like all the edges, like everything pretty much and that's not, you know, it's not something that I - I'm not always aware of it. It's just"¦

 

JENNY BROCKIE: Why do you need to do it?

 

ELLIE HANNAN: It kind of gives me something to focus on that's not all the other thoughts that are"¦

 

JENNY BROCKIE: So it's comforting in a way when you do it?

 

ELLIE HANNAN: Yeah, yeah.

 

JENNY BROCKIE: Yeah? And when you say there are other things that you do fear consequences, what kind of things are they?

 

ELLIE HANNAN: Um, probably the thing that's the most distressing is I've got a lot of intrusive violent thoughts which is the most horrible. I mean like they involve my sister, they involve my best friends, kids that I babysit, and it's either that I'm thinking if I don't do this, this is going to happen to them. Or I think I'm about to hurt this person and I know that I'm not. Like I know that I wouldn't hurt someone deliberately but it's this sense of feeling like I'm about to do it, which can be really"¦.

 

JENNY BROCKIE: Distressing?

 

ELLIE HANNAN: Yeah, yeah.

 

JENNY BROCKIE: But you've never done anything like that?

 

ELLIE HANNAN: No, no, no.

 

JENNY BROCKIE: It's just a thought, an intrusive thought?

 

ELLIE HANNAN: Yeah.

 

JENNY BROCKIE: Yeah, and what happens to that thought? Does it stay with you, do you have to do something to alleviate it? What happens, what do you do with it?

 

ELLIE HANNAN: It kind of changes. There are sometimes where I'll have mental kind of rituals and things that will kind of alleviate that, that stress, but other times it's just I try and ignore it. I try not to think about it because I feel like if I allow myself to think about it, then I'm going to allow it to happen. Which I know doesn't make sense, I mean like I would think that I'm smart enough to see that that is just not logical, but it's, it's like there's two, like two parts of my brain that fight each other.

 

JENNY BROCKIE: So there's a part that knows?

 

ELLIE HANNAN: Yeah.

 

JENNY BROCKIE: It's not going to happen, it's not logical?

 

ELLIE HANNAN: I mean, yeah.

 

JENNY BROCKIE: There's another part that still has the thought?

 

ELLIE HANNAN: Yeah.

 

JENNY BROCKIE: Like still has the fear?

 

ELLIE HANNAN: I know the chance of the house burning down an in an electrical power because I leave a power point on, like I know that the chances of that are minuscule, but on the flip side it's like, you know, if you're going to keep worrying about this could happen, this is going to happen, why would you risk it?

 

SANDRA PRITCHARD: There's an element of truth to these, the fears that you have, I think that's the problem. A lot of them aren't just nutty things that, you know, if someone said to you oh, I'm worried that the frogs are going to fall from the sky. You'd probably go well that's just stupid, of course it won't happen. But a lot of the things that people worry about they could actually happen. There is, there's a chance, I mean electrical fires do happen.

 

JENNY BROCKIE: The odds are probably really long that they're going to happen.

 

SANDRA PRITCHAD: They are and that's right but to people who have OCD, there's only black and white, there's no oh, it might happen. If there's a small chance I've got to check because you can't rest unless it's, you know, unless you've investigated.

 

ELLIE HANNAN: Yeah.

 

JENNY BROCKIE: Is that right Ellie?

 

ELLIE HANNAN: Yeah, yeah.

 

JENNY BROCKIE: Leanne, you're Ellie's mum, how does this affect you as a mum and what is it like for you to deal with as a mother?

 

LEANNE HUMPHREYS: Well I think we probably knew, or I probably knew there was something happening for Ellie from the time she was maybe one. She was a fabulous kid but there were things that were happening that I thought I could see, they weren't kind of screaming OCD, she just "¦

 

JENNY BROCKIE: Because you and your husband are psychologists, yeah?

 

LEANNE HUMPHREYS: Yeah, we're both clinical psychologists, yeah. So for me, you know, seeing that she couldn't sleep, she just couldn't wind down, she couldn't switch off mentally. Physical sensations were really hard for her, like loud noises were too loud and overwhelming and physical touch was too harsh. She couldn't walk bare foot on grass and she couldn't sleep on flannelette sheets and she would, she would feel pain probably more so than I would expect and she would cry really easily and, you know? So as a mum, you know, I felt like I couldn't make my child happy. I didn't know it was OCD. So probably, you know, it was about trying to keep her calm and trying to keep the family on an even keel, yeah.

 

JENNY BROCKIE: And Ellie you have Tourette's as well?

 

ELLIE HANNAN: Yeah, I do.

 

JENNY BROCKIE: Which often goes or sometimes goes with OCD?

 

ELLIE HANNAN: Yeah, there's a really high link, they reckon about 50 percent of kids with Tourette's have OCD. Like that's diagnosed OCD and"¦

 

JENNY BROCKIE: And how does that affect you?

 

ELLIE HANNAN: Um, well, as you can probably tell, I'm not really sitting that still tonight. It's, it gets worse in any extreme of emotion so you know, not just being anxious, but if I'm really excited about something it kind of ramps up as well. It's, when it first became a problem I thought this is the worst thing in the world. Like I hate it, I would, you know, I just want to get rid of it. And then, you know, the OCD and all that other stuff kind of became more of an issue and I was yeah, the Tourette's is fine, I don't really care.

 

SCOTT DRAPER: Can I just say, for me, first of all I want to be mindful of something I said before about I was able to stop it and I hope that also doesn't give anyone else a feeling of there's something wrong with me that I haven't have been able to stop it. I'm being mindful of that. But on the flip side of that, I really have this feeling inside of there's hope that it's possible to come out the other side to some degree, and even your story Ellie has really resonated with me because I've never been involved, because I was never diagnosed, I never spoke to anyone about it, it's 22 years ago, listening to some of the stories is nearly creating, you know, a physiological kind of response to me, you know, by just remembering those times.

 

It's just amazing sitting here as someone that was a big part of my history, but you know, there a realisation too that there's still things in there that are OCD tendencies but I've just been able to manage them for some reason or another, I don't even know why. Even Jess, you and I, you comment on me doing this with my thumbs, you know. Jess, you commented on me doing this with my thumbs.

 

JESS DRAPER: Yeah, I saw you doing it as well.

 

JENNY BROCKIE: Jess is your wife.

 

SCOTT DRAPER: Yes, and Jess, I never really knew I did it but I have this thing where I just rub my fingers together and there's been times where, you know, the quick gets worn away and I think that there's an underlying feeling for me it's hard to be very still. Tonight I've actually realised that I still have things that I do, just by listening to stories because I never really talk to too many people about it, but yeah, I have it under control. I accept it.

 

 

JENNY BROCKIE: Let's talk a little bit about treatment. Sandra, you talked about seeing someone, that you'd been seeing somebody, are you taking any medication?

 

SANDRA PRITCHARD: No. I can't actually take pills because I will just spit them back out and check that it's not something that I shouldn't be ingesting. I do want to get better but there's also that part of me that's frightened to get better and I think medication may well help and I'm frightened of that help. There's a part of me that doesn't want it.

 

JENNY BROCKIE: Why?

 

SANDRA PRITCHARD: I'm used to the suffering. I've suffered a long time and I know what that is and I know how that feels and I know how it feels to do my rituals and have my scary thoughts and be frightened of something. I know how that works, I know how to do that very well.

 

JUSTIN PRITCHARD: What she'd often say to me is she doesn't know who person will be, even though I see it.

 

JENNY BROCKIE: Who the person would be without it?

 

JUSTIN PRITCHARD: Yeah, without OCD, and that's been the biggest thing about me attending therapy with Sandy is that I've been able to separate OCD and Sandy as well into two separate things and that's what we hope one day Sandy can do the same thing.

JENNY BROCKIE: Ellie, what about you? What sort of treatment are you getting?

 

ELLIE HANNAN: I'm on a couple of different medications, they don't actually have medications that specifically treat OCD but I'm on an anti-depressant and a low dose antipsychotic and that has made a big difference, the last two years we just thought stick with the medication, deal with the side effects, just get through the HSC and then look more into, like more serious exposure.

 

LEANNE HUMPHREYS: Ellie's actually also really good at being very routine with her bed time, so sleep has been a major difficulty. I think last year and the year before three, four, five hours sleep a night every night and still managed to get herself to school. So medication and lifestyle is the approach that Ellie has chosen at this point in time and my husband and I just kind of go okay, we'll wait and that's her choice, that's her choice.

 

JENNY BROCKIE: And wait for what, you'll wait"¦

 

LEANNE HUMPHREYS: Exposure therapy.

 

JENNY BROCKIE: And do you want to do exposure therapy Ellie?

 

ELLIE HANNAN: I don't think anyone ever wants to do exposure therapy.

 

 

JENNY BROCKIE: Let’s explain what exposure therapy means. It means being confronted with the very thing that...

 

 

ELLIE HANNAN: Yeah, so basically whatever the trigger is, you're exposed to the trigger which causes the anxiety response and the idea is that, you know, when you do a compulsion or a mental ritual or avoidance, it kind of neutralises that. It drops but then the cycle just keeps going, so the idea of exposure is you don't let yourself do the neutralising behaviour, then it kind of breaks the cycle.

 

JENNY BROCKIE: So it's like exposure therapy with phobias?

 

ELLIE HANNAN: Yeah, yeah, it's the same idea.

 

DR CHRIS GALE: The difference is response prevention. You do the exposure which, for example, might be a tape of the very bad thought you're having, but you're not allowed to do the ritual and this is incredibly distressing. This requires incredibly skilled therapy. This requires a deep and abiding trust with your therapist that this person's not going to hurt you, is not going to be bad for you, has got your best interests and you need that basic human trust to be table to do this. And this is why I'm very worried to hear that the funding is going from a therapist.

 

JENNY BROCKIE: Jessica, how do you treat OCD?

 

JESSICA GRISHAM: I guess I'd like to say that there's been a lot of discussion and I fully agree how intense and scary it can be to do exposure response prevention, but I think what I'd also like to highlight is how liberating people can feel who do take exposure response prevention and there's decades of evidence showing that for people who are able to engage in this treatment, that it can be life changing and I really think it was very poignant what Sandra said about life changing can be scary. If you've had OCD for a long time it's scary to think about what it would be like without it, but we have had a lot of success with people who take that very courageous step and experience huge gains that they maintain and it comes as close as a cure as we can see in psychology.

 

 

MALCOLM HALES: Sorry to cut you off, our experience has been, and we're from Tasmania, our experience has been around this that the psychologist, the psychiatrists, whoever feels that they could have been able to support Kim, haven't had the expertise or the real understanding what OCD is in a severe case. And so our treatment opportunities in Tasmania were very limited and"¦

 

JENNY BROCKIE: And sorry to interrupt you but I wanted to ask Kim about it because you've had it for most of your life, OCD, yes?

 

KIM HALES: Yes. I suppose it makes life torture, just makes living torture.

 

JENNY BROCKIE: You needed constant reassurance, didn't you, this was your particular thing, that you would seek constant reassurance from your family, about what kinds of things?

 

KIM HALES: It makes me teary now to think about it.

 

JENNY BROCKIE: I'm sorry, if you don't want to talk about it, that's fine.

 

KIM HALES: That's okay. I had thoughts that I could be wishing something awful for my children, like wishing them dead or something like that. Or wishing things about Malcolm or my parents and I thought it could happen to them. So I would"¦

 

JENNY BROCKIE: A bit like what Ellie was talking about before?

 

KIM HALES: Yes, yes, exactly. And so I felt I needed to pray to God to say I didn't mean that, or I don't want any of that sort of thing to happen. And I could not cope with all the thoughts that were coming in my head and praying all the time and so I would ask my mum or Malcolm for reassurance.

 

MALCOLM HALES: Kim had fourteen stays at the Melbourne Clinic, up to six to eight weeks at a time. We had to put her into hospital in Tasmania just for us to get respite for periods of time, Kim's, it was torture for her as much as it was for us because from 2006 to 2010 Kim would have these thoughts and be intrusive into our lives for ten, twelve, fourteen, sixteen, eighteen, twenty hours a day for five years and we had no resolution. I had to take a bit of time off work, some part-time work particularly 2010 when Kim was addicted to the Xanax and I have no doubt as I sit here if I hadn't done that I would have come home from work one day and she would have died, one of with us would have died I think.

 

JENNY BROCKIE: Dennis. You're a neuropsychiatrist, what did you do with Kim?

 

PROFESSOR DENNIS VELAKOULIS: I'll tell you what we did but I'll preface it by saying that what we did is a very rare treatment.

 

JENNY BROCKIE: Extremely rare?

 

PROFESSOR DENNIS VELAKOULIS: Worldwide probably less than a hundred people, Kim was the first one to receive deep brain stimulation for OCD in Australia and to date there have been five people so far, five people in Australia over a four or five year period.

 

JENNY BROCKIE: And what did deep brain stimulation involve?

 

PROFESSOR DENNIS VELAKOULIS: So deep brain stimulation started off being used in Parkinson's disease, it involves the implantation of electrodes, so a neurosurgeon is required. It's a huge team of people involved to get this treatment done. It involves implantation of electrodes into the brain, into certain structures of the brain, and there's a pace maker that sits under the chest which allows us to change the settings, and it delivers an electrical current into the brain, into those brain regions which we think are involved in the generation of symptoms in OCD.

 

JENNY BROCKIE: And what happened Kim, when you had that treatment?

 

KIM HALES: Well, the thing is just prior to that operation there was a bit of a shift in my thinking. I seemed to become a little bit better. But since having the operation done my obsessions and compulsions have definitely abated. Not completely gone but definitely the pressure has been so much easier to handle.

 

JENNY BROCKIE: And Dennis, how do you regard as the results of this treatment?

 

PROFESSOR DENNIS VELAKOULIS: The results for Kim have been consistent with what we've seen with other patients who have had this procedure, it's consistent with what the international experience has been as well.

 

JENNY BROCKIE: Jessica, your thoughts overall about treatment.

 

JESSICA GRISHAM: I think the message is that there is help out there. That there are effective treatments available and that even though it may seem really intimidating or scary to try and take that first step to call and make an appointment, do an assessment and see what the treatment recommendations are, that it takes a lot of courage and a lot of courage. I really respect the people who have come on today and told their story about their symptoms but there is things out there that can really change your life and it's worth pursuing.

 

JENNY BROCKIE: And Sandra, what do you think is the next step for you?

 

SANDRA PRITCHARD: I haven't thought this far to be honest.

 

JENNY BROCKIE: Do you think you'll go back into treatment?

 

SANDRA PRITCHARD: It depends on what happens in the next few weeks.

 

JENNY BROCKIE: Okay. Thank you so much for sharing your story with us tonight and thank you all for sharing your stories - really appreciate it, it's been a very interesting conversation and of course you can keep talking on-line. That is all we have time for here but let's keep that conversation going on social media.