‘We even thought of ending our lives’: A family’s struggle with their child’s OCD and how they came out on top

SINGAPORE: He stood frozen in the toilet for up to five hours at a go, often walked an overhead bridge backwards and found comfort opening and closing the refrigerator door repeatedly for hours.

These are the memories that Evelyn Chng and Tony Kee have of their son’s childhood.

Evelyn and Tony first noticed something was amiss in 2011, when they received a memo from their eldest child, *Bruce’s (not his real name) Mathematics teacher about him not handing in eight weeks of homework.

Tony had wondered if his 14-year-old son – who was exceptionally skilled at Math – was struggling under the stress of his Triple Science course or his experience being bullied a year ago. Concerned, he looked for Bruce’s school bag.

“I discovered the question papers, all crumpled inside. That’s when I realised that something was not right,” the 51-year-old recounted.

For the next two years or so, the Kees watched as their usually happy-go-lucky and active child became increasingly reticent and withdrawn. Bruce, who used to place in the top 10 per cent of his cohort, started to become untidy and fall behind in school. as well. 

Just months before he was due to sit for his O-Level examinations, he was diagnosed with Obsessive Compulsive Disorder (OCD).

OCD is a mental health condition that makes it “difficult for individuals with the condition to process information”, says Haanu Prithivi Raj, senior clinical psychologist at the Institute of Mental Health’s (IMH) Department of Child and Adolescent Psychiatry.

“Having OCD is similar to having a broken filter or sieve in the brain. When the sieve works, the brain is able to ignore intrusive thoughts (that do not make sense) that we all have. However, when we have OCD, the sieve or filter is broken or torn and hence these thoughts fall through and this causes distress to us as we are not able to ignore these intrusive thoughts and fears anymore,” Ms Raj told CNA.

While there is not much data on OCD in Singapore youth, Ms Raj estimates it could affect up to 4 per cent of youths here, which is almost double the global prevalence of 2 to 3 per cent. From 2014 to 2018, the IMH Child Guidance Clinics saw an average of about 130 children and adolescents aged between 6 to 18 years old with OCD.

When Tony and Evelyn received the diagnosis, they didn’t know what to do. 

“We thought that it could be treated,” recalled Evelyn. 

“We thought OCD could be fully recovered from – with everything reset back to normal,” Tony said.

Then, Bruce started to display compulsions during his first semester in polytechnic.

“By 17, his condition was already severe. He would keep going in and out of the classroom doors during class because of anxiety,” said Evelyn.

Both parents recall having to wait hours in the school’s carpark as their teenage son flitted in and out of his empty classroom in a deserted school. Because they had no access to the school’s facilities, they sometimes had to enlist the help of a security guard to escort their son down.

Bruce also began calling his mother from the canteen every day to help him decide what to eat. Once, he called her to ask if he could bring an empty wrapper back.

“He couldn’t seem to make decisions. His decision-making was affected,” said Tony, who works in the financial services sector.

At home, Bruce would spend several hours in the toilet after a shower, standing in one spot as if frozen in time.

When he was ready to exit the toilet, his family was forced to rearrange the house to the state it had been in before he entered hours earlier, or else, he could not bring himself to enter an environment he perceived to have no control over.

This daily occurrence meant having to switch off all the lights and gas and wait around, even if the family happened to be preparing dinner at the time. 

These rituals were a way for Bruce to relieve his anxiety, Evelyn, 49, explained.

Whether it is counting or what, he will have to do whatever feels right. If he doesn’t count properly to relieve the anxiety, then he will feel like it is incomplete. Once he does complete it, he releases his anxiety and everything goes back to normal. 

“OCD MANIPULATES THE WHOLE FAMILY”

Even though they were hoping it was just “a passing phase of puberty”, the Kees brought their son to a temple where they were told to perform rituals to rid him of “spiritual possessions” and “bad luck”.

“It’s that thing when you’re hopeless and confused and everything people say, you just believe. You just grab it,” said Tony with a wry smile.

“It was so bizarre that we could not even try to understand. We were trying to see what we could do to help him because … he had just changed into another person,” Evelyn said.

Things soon came to a head in 2014 when Bruce was asked to leave his diploma course after his first year of study due to poor results. Hospitals they had applied to for treatment also rejected him due to the severity of his condition. Evelyn suffered two breakdowns and had to be hospitalised, she said.

“I was under too much stress … I had a panic attack because of his rituals. It affected the whole family because we had to try and manage his anxiety,” Evelyn recounted quietly.

Back then, she was acting as caregiver to her mother with dementia as well.

“I felt like an octopus. I didn’t know what to do. I didn’t know what to handle and what came first. I didn’t know how to manage.”

Bruce also didn’t allow the family to eat in the kitchen or talk at home as it made him anxious and affected the rigid rules and order he expected himself and others to abide by.

He also targeted his younger sister whom he couldn’t stand the sight of, once going so far as to impede her from going to the toilet for several hours when their parents were out.

Soon, Bruce began demanding that his mother helped him with some rituals, such as the opening and closing of the refrigerator door.

“I was being sucked into his rituals. My husband tried to intervene and I got sandwiched in between trying to manage his anxiety and not participate,” said Evelyn.

 “When he got tired, he would ask me to complete the ritual and I had to do exactly as instructed. He would beg me saying ‘Please mummy, last time, last time’ when I refused. He would also shout and yell.”

Evelyn often attempted to remove herself from the situation. In the middle of the night, she would walk out of their home and sit at the staircase landing.

“He would try to stop me from leaving – which stopped him (doing his rituals) … and sometimes, I would end up dozing off because I had to sit there for one to two hours while waiting for him to calm down,” she said, grimacing.

“It was painful, but I had no choice.”

Dr Adrian Loh, visiting consultant with the Department of Child and Adolescent Psychiatry at IMH explained that children and teens suffering from OCD frequently display compulsions such as touching certain objects in a specific pattern, or having to say things in a certain way, without understanding why.

“In some of these cases, all they can explain is that this just ‘feels right’, leading to much parental frustration. In some cases when sufferers are unable to obtain relief from overwhelming anxiety and discomfort, they may even end up with rage attacks which can be misunderstood as misconduct by family members,” added Dr Loh.

“IT WAS HELL. IT WAS HELL”

Dealing with a child who had to perform rituals at the expense of the family’s peace meant several clashes and fights within the family.

“The police have come (to the house) so many times that we can apply to be VIP members,” joked Tony.

“Sometimes, it was us who called. And sometimes, it was the neighbours from the opposite block who called because … of the serious fights. It was too stressful and my daughter and I would get very scared when they fought as they would throw things here and there,” Evelyn said.

Tony and Evelyn were also at constant loggerheads due to the mounting stress.

Said Tony: “It’s like … as a man, in the office, you can solve an issue. But you can’t even bring your child from the toilet to the bedroom. It’s just a short distance but you can’t do it, you know? The frustration was just too much,” he said.

At their lowest, the couple who have been married for 25 years, briefly considered ending it all.

“It was hell. It was hell,” said Evelyn.

We even thought of ending our lives that time. We couldn’t take it, because we were actually feeding his OCD. He was also refusing to seek continuous treatment with the psychologist so we were at a loss because we didn’t know how to manage.

Father and son stopped speaking to each other, and Bruce began to regard Tony as an enemy.

Not even extended family were privy to the situation and the Kees suffered in silence as both parents feared the stigma young Bruce would face if people found out he had a mental condition.

Neighbours started giving the family the cold shoulder on account of Bruce’s odd behaviour in public. They had spotted him walking backwards on roads and overhead bridges, or pacing up and down in nearby bus stops for hours.

“Once, we tried dragging him home, but he went back to the place because he had to complete his ritual. (At home), whenever we tried bringing him from the toilet to his room, after we turned off the lights, he would come out and go to the toilet and finish his ritual then go,” said Tony.

Oftentimes, when he was coming home, Bruce would stop just shy of his front door to perform a mental ritual that would have him wait outside for one to two hours while his family waited inside, unable to leave. 

THE TURNING POINT

A turning point came in 2015, three years after Bruce was diagnosed. Tony recalled being in a heated quarrel with Bruce one night when the elder Kee’s cousin – who was called in for help – walked into the house, demanding to know: “What happened again this time? Why again?”

“When I heard her saying it like that, I told myself I need to make some changes, otherwise one day, even your own cousin will not come and help you anymore,” he said.

The realisation drove Tony and Evelyn to begin searching for support groups. They attended an OCD seminar at IMH where they came across Caregivers Alliance (CAL) which helps caregivers of mentally ill people.

“We began attending their classes and from there, it started to change our perception,” Evelyn said. “We got to hear other people’s stories when they shared. We learned about how to journey with them, the symptoms itself and working closely with the medical team. (This) really helped us.”

Around the same time, Bruce was accepted by IMH for treatment and his parents picked up skills on how to reinforce those messages at home.

“I tried to find out how I could actually support him at home – how to not reinforce his behaviour and participate in his rituals at home,” said Evelyn. “They used Exposure Response Therapy (ERT), so at home I used other forms like daily chores or daily routines to build back his confidence and self-esteem.

“Because of his OCD, he was very good at cleaning, cutting vegetables – so I would ask him to do that for me. After that, I started to look at his strengths. If he could do (a task), I would tell him, ‘Thank you son for helping me with this’.”

“After that, he started to change and we could empathise with what he was going through. We were no longer fighting,” she added with a smile.

For Tony, the courses helped his wife and him to develop a “common language” that helped them at home when caring for Bruce.

“In the past, she had her method and I had my own method and we always clashed. So going for the courses helped us a lot,” he said.

JOURNEYING WITH OTHER SILENT SUFFERERS

Motivated by their breakthroughs, Tony and Evelyn began volunteering with CAL, conducting training for other caregivers in Mandarin.

“Along the way, things got better and better,” said Tony.

In class, caregivers marvelled at the pair’s experience dealing with their son’s OCD and Evelyn’s mother’s dementia.

“They asked us: ‘Eh? How come you look healthy?’” laughed Tony.

“That’s how people viewed us,” said Evelyn. “We were a source of inspiration, a source of hope.”

Encouraged by the results, Evelyn left her job in retail pharmacy to join CAL as a caregiver support specialist.

She and her husband also signed up for an 18-month-long graduate diploma course in counselling and psychology, which allowed them to become counsellors with CAL. They now hold three-hour classes for caregivers in Mandarin every week. When this reporter sat in for one of their classes, the pair was engaging and jovial, often joking to keep things lighthearted.

“We wanted to help those walking the same journey as us. Patients themselves may be in denial because they don’t have much insight. The family members might feel that it’s okay la, just cope and live with it. But it’s very difficult – it will get worse, and not only that, it will disintegrate the family,” said Evelyn.

Looking back, Tony admits he wouldn’t have considered volunteering if not for years of struggle with Bruce and his mother-in-law’s situation. “I took it as a lesson that I needed to go through to learn from it.”

Perhaps most surprising is that Bruce himself, now 23, recently joined IMH as a full-time peer support specialist, egged on by his mother.

“I told him: ‘Since you’re recovering to a stage where you are more stable, what do you want to do? What do you want to move on to in life? Work or study?’ So when the National Council of Social Service offered this course, I actually encouraged him to go for it,” Evelyn said.

“On the first day, he was five minutes late, but from the second day onwards, he was half an hour early and even volunteered to leave the house early,” Tony said.

He and Evelyn were soon amazed at the transformation in their once-incapacitated son.

“I encouraged him to view his illness in a different light and he began to realise that there were so many people walking a similar journey. His view and perception of his peers, mental health and people with similar conditions really changed then,” Evelyn said.

She was overjoyed when Bruce told her: “Mummy, I am happy you know”, when he came back home after work.

“Along the way, he told me: ‘All of us have gone through a certain kind of abuse for our mental condition and there are so many people out there who actually need support in health’ and that he wanted to thank his psychologist and psychiatrist for helping him to achieve what he is today. He had never thanked them until that moment, but after the course, he had learned to appreciate them, and I remember thinking ‘Wow’,” Evelyn said proudly.

“Now he is able to advise me on what kind of therapy to give his por por (Mandarin for grandmother) and how to speak to her. There is a drastic change and we can see that he is going back to what he used to be – a very lovely, kind and helpful boy,” she said.

Still, they understand that Bruce’s mental illness is a life-long journey.

“Of course, now he may be coping well, but in the future we don’t know. It’s still a lot of uncertainty, but we can only be hopeful and be positive,” said Evelyn.

“We told him that ‘This is meaningful, and you’re creating value with your life, and that is all that is important – you don’t need to have very high qualifications to live that type of life … you’re actually giving hope to others that recovery is possible and your loved ones can be treated. That is the satisfaction.’”

***************

CNA spoke to Bruce about his experience with OCD and this is what he shared with us:

What is your OCD based on?

Bruce: For me it’s checking and mostly I have to do things right. I have a particular way (of doing things) that is correct that I have to do. It’s based on my own logic.

What kind of rituals are involved?

Bruce: Like there are things that I need to place in certain areas of my house. And when I do things, I sort of plan them out in my head before I do them – there’s a certain order.

What happens when it doesn’t fall in that order?

Bruce: Then I will feel like very stressed out, because I had already planned out everything nicely in my head. I’m very aware of how people view me. Even if people aren’t judging me, I have that feeling that people are judging me. 

What kind of rituals were you doing in the toilet?

Mental rituals. After bathing, I do my mental rituals inside my mind and they mostly involve counting and running through all the steps and all the things in my head. The steps are mostly related to showering. I’m just usually slowly moving through the steps. And I’m also trying to sort out all the things in my life, because in the toilet I feel more comfortable. After bathing I’m very relaxed, so I just sort like staying in there. So I’m done with my shower already when I do the rituals, I just want to stay in the shower. 

Your parents said after you come out of the shower, the surroundings have to be the same.

Yes, because I sort of feel like things are moving around without me – it’s like I didn’t have a feeling of control over the moving things. I need everything to be in the same place because I want to feel a sense of control.

How are you learning to cope with OCD now? How are you living with the anxiety?

What I do now is mostly keep myself engaged … like do things. Even if I’m at home, I’ll be surfing the Net, or finding something to do to keep my mind occupied to distract myself. Because if I don’t do anything, I tend to think a lot. Because my normal state is picking on all the details where I am very aware, I’m hyper-aware.

So I know that if I don’t do anything, I will go back to that state and nitpick on everything happening around me. I know that that is actually not good for me and it would make me go back to past habits so I try to focus on what the ERP (Exposure Response Prevention) taught me – which is keeping myself occupied. 

Between graduating from therapy and now, have you ever felt the need to perform your rituals creep up on you?

Yes, when I started work, I did. Because working needed me to go back to work the next day. But now it is more controlled – I can sort of resist it even though I still had the urge to do (the rituals). I try to distract myself, mostly. 

It has helped me to be more spontaneous also. Because of doing things that are sort of losing the control already so I’ve gotten used to it and I start to feel more at ease with just suddenly doing things instead of overplanning and making sure that things go a certain way. Now I am more able to just react as things happen.

Your parents took up a lot of courses and studied to walk on this journey with you and today they are helping caregivers. What do you think about what they have done?

I think it’s a good thing because they help others. It’s because of my mum taking part in this caregiver thing that she made me go for the sessions and that made me more aware that I wanted to help people also. After I went for the sessions then I started to want to help out with peer support. I was inspired when I saw my parents teaching others. 

I am grateful that they took those steps to help me. They were my pillars of support as well as my psychologists … they were not ostracising me. 

What has it been like as a peer support specialist for the past three months?

I feel like it’s a good thing, even though it may not seem like a good job in the eyes of the public. I feel like it makes me able to do things. It is meaningful and it’s something that I want to wake up and do. It’s not like some jobs where you have to drag yourself to work because this environment is quite good I feel. The people are nice and I feel very at ease. I work with a multi-disciplinary OCD team where I’m the only PSS.

What is a regular day like for you?

Because they don’t want to rush me through, I only currently have a few patients that I’m working with. I either talk to them over the phone or if I can meet them face-to-face, I’ll meet them face-to-face and just talk to them. It’s quite simple, it’s just befriending and just being yourself. 

Have you met any patients who are in the same place that you once were?

Yes, some bits, but not exactly the same. Certain parts when I hear more about their personality, I can relate. If they are perfectionists, I can sort of relate that I’m also like that in a certain way. I can use my experience to talk about how I would react to and how I apply and handle certain things.

I think doing this helps me in my own recovery because I go back home and reflect on it and it becomes more instilled in myself that I did go through this and I’ll remind myself that I should not (go back to that).

What is one piece of advice you would give a youth who has OCD?

They must be willing to seek help, because for me at that point, I didn’t really accept that I had OCD. I think awareness … being aware of it is quite hard. For me, I didn’t have awareness but my parents sort of forced me to seek help, so I sought help.

If you have a feeling that maybe things are not really right, try to seek help and be willing to receive therapy, treatment and medicine. I think one thing that stops people from recovering is that a lot of the patients with OCD, if they aren’t being forced to receive help, they won’t want to seek help – they think that there is nothing wrong with them.

For me, I also thought that way. I thought: “I’m normal, what. OCD is just some doctor’s label”. Spending 4 hours in the toilet … To me, it was not illogical in my point of view. I just thought that it was my way of doing things. It didn’t occur to me that it was OCD. I just thought it was my personality. 

OCD is highly treatable. You have to be conscious of what OCD is like so that you know if you have some traits that start to affect your life, then you have to be willing to seek help. It’s not the end of the road if you are diagnosed with OCD. 

*Bruce’s name has been changed to protect his privacy.