Life with OCD, up close

A treatment course with checking-related OCD

Life with OCD can be, and for many people is, an exhausting struggle with a condition that does not simply let go. From the outside, people with OCD may appear clearly distressed by their symptoms, but what is it actually like from the inside? How do you find the motivation to push back against OCD, and how do you find small victories in everyday life when everything sometimes feels as if it hardly matters? I asked a client about this, and about much more.

The client came to the clinic because of difficulties linked to electrical sockets, the cooker and candles at home. The client, who is in her mid-fifties, was finding it increasingly difficult to leave for appointments and work, because leaving the house involved a long checking routine focused on sockets, lamps, the iron and the cooker. The checking routine felt necessary to her and included touching lamps, sockets and the cooker to check whether they were warm. A similar checking routine was also part of an evening ritual before she could go to bed.

The client has received one year of treatment at the clinic, consisting of individual sessions with a licensed psychologist with specialist expertise in OCD and regular home visits with a graduate psychology student in a one-year clinical training placement at OCD Klinikken. The home visits focused on exposure, where the client and the graduate psychology student carried out small exposure exercises together. The exercises gradually increased in intensity and difficulty as the client mastered more and more tasks.

One year later, the checking routine before work and before longer periods away from home has been reduced significantly. The client no longer touches switches and lamps, and she can leave electronic devices, such as her phone, tablet and toothbrush, charging overnight. The routine has been reduced to scanning the house by simply looking around the rooms to see whether everything is as it should be. The cooker is still difficult for her: checking it still takes 10 to 15 minutes before she leaves home for work, while longer trips away from home still require a longer check.

Limitations in life with OCD

There are many things you cannot do when you have OCD. Or at least there are many things that become harder to do because of OCD. This can place major limits on life.

I asked the client what limitations she had experienced in her life with OCD. She answered that it had caused her a great deal of stress and taken up a great deal of her time. Every time she had to leave the house, OCD was part of the process. She felt limited when she was going on trips where someone had to pick her up, or where she had to be ready to pick up others at specific times. Even going to work or away for the weekend required a lengthy planning process to make sure everything was as it should be. She also said that she had almost certainly turned down trips or plans without fully realising it, because leaving the house felt too overwhelming. This could also mean turning down evening plans after a day at work, because she had already left the house once that day and been through the checking routine. In checking-related OCD, doubt, control and repeated checking often take up a great deal of space.

The client described how her life and ability to move freely had become restricted. She feared that over time it would become harder and harder for her to get out of the door. A frightening future scenario began to take shape for her: that in 10 years, she might not be able to go out at all.

Motivation to begin treatment for OCD

How do you decide to seek treatment when you realise that a behaviour is creating problems in everyday life, and perhaps also in the longer term?

The client describes how the decision to seek treatment, and the first period in treatment, involved several stages. First, she noticed that her behaviour was different. Then the behaviour was given a name, and she gradually began to recognise that it could be OCD. Overall, the process moved from the first moment of recognition to professional treatment, normalisation and motivation to work with OCD.

In her case, the process began with a conversation with her sister, who said, “you have OCD”. Discovering that the behaviour had a name changed something in the process of beginning treatment. It started a process of recognising that she might have OCD. The client says that after the first treatment sessions, she began to recognise that she actually did have OCD.

Another important thing at that point was discovering that something could be done about it. This was not necessarily something she would have to suffer from to the same degree for the rest of her life. The knowledge that something could be done gave her motivation to do something.

I then asked what thoughts she had before beginning treatment.

“Will it work? Can I become completely free of OCD, the way I want to? Could I live my life free as a bird, without being weighed down by OCD every single day?” was the client’s clear answer.

OCD treatment requires active work

Early in the treatment course, the client realised that OCD treatment required her active participation. No one could simply take OCD away from her. It was up to her too. In the first sessions, she gained a great deal of knowledge about OCD, but it also became clear to her that she had to work with it herself. At that point in the process, frustration appeared, along with the thought that it was not helping. How do you still find the motivation to continue?

The motivation to continue treatment was the fear that she might never be able to leave the house. This kind of restriction helped sustain her motivation and made her want to keep working in the fight against OCD.

The next part of the client’s treatment involved exposure and response prevention at home.

Exposure exercises as manageable challenges

Exposure exercises often bring up discomfort, doubt or fear in people with OCD. They are therefore planned as manageable challenges. They need to be noticeable enough for the client to practise something new, but not so intense that the exercise becomes overwhelming. In treatment, the aim is usually a moderate level of discomfort, often around 3 to 4 on a scale from 0 to 10. The goal is not to push the client as hard as possible, but to create experiences the client can recover from quickly and build on.

The client’s immediate reaction to the exposure exercises was positive. She felt that something could finally happen. She felt that she could take matters into her own hands and do something. She had the impression that we, as clinicians, were on her side and believed things could get better. She felt taken seriously, and that meant a great deal. She knew it would not get better without the exposure exercises and was therefore highly motivated to get started.

Frustration during OCD treatment

All beginnings can be difficult. New training can be demanding, even when it is adapted to the client’s level. OCD exposure exercises are no exception, and they can continue to create frustration even after they are no longer new.

The client says that frustration is a major factor in the fight against OCD. It is something you have to learn to handle and take care of. With the right approach, frustration can also be used constructively in the work with OCD.

The client describes to me how every single day can be a struggle, and how feelings and thoughts follow a particular pattern. She describes it as a wheel, a “never-ending story”. The wheel brings together two possible tracks: when the exercises become too difficult, frustration and doubt can pull motivation down; when the exercises succeed, the experience can create joy and courage for the next step.

In this pattern, the starting point is the motivation to begin treatment. The fear of being unable to go out gives motivation to work actively with OCD. The clinicians and her own effort give her a belief that it can work through the exposure exercises.

Frustration can arise here, especially when the exposure exercises do not go equally well every time. The client emphasises how frustrating it is when, intellectually, you know what would be helpful, but you still cannot always act on it. When exposure exercises become too difficult or are not completed as planned, this can bring up doubt and the thought that perhaps it is not helping after all.

At this point, the process could have come to a halt. But with the client’s insight into her own behaviour, she again became aware of what had motivated her to begin treatment in the first place. In that way, she found renewed courage to engage actively in the treatment.

When exposure exercises are completed as planned, the process can instead move in a more helpful direction. The joy of completing the exercises becomes more prominent, and the experience can give courage for the next step.

Throughout the course, there is a process of coming to terms with OCD: getting used to the idea of having OCD, finding out what can be done, and exploring whether this changes the person’s view of herself and her life.

This process does not necessarily stop if the person takes a break from exposure exercises because they feel too overwhelming. The process may then turn toward understanding what led to the break. It may involve exploring why the motivation to continue no longer feels as strong as before. Perhaps it is a recognition that the person is not yet ready to work fully with their OCD.

If the person continues with the exercises despite resistance, the process can move toward more freedom in everyday life and less control by OCD. This process is an important part of the road ahead, even after the treatment course has ended, because it helps shape how the person sees herself and her life in the future.

What the client gained from treatment

At the end of the interview, I ask the client what she feels she has gained from treatment, and how she now sees her future.

She says that she has become wiser about her problem, and that awareness of and knowledge about OCD help. “Knowledge about OCD has given me an opportunity to change my situation.” She describes her knowledge of OCD as necessary for her work with it. She sees the possibility of changing her own situation as an important factor in her fight against OCD.

She reflects that it still requires a great daily effort, describing it herself as working incredibly hard. She knows that things have improved. Despite the improvement, on bad days she still feels that the problem is just as big as it was a year ago. She feels that OCD has developed from being a problem into a more complex dilemma. It feels complex because, unlike before treatment began, she now has something she can do.

We also talk about how some of her OCD can be understood as unhelpful habits. She describes her OCD and the work with it as a game of Jenga. When she first came to the clinic, she had a broad range of problems linked to electrical appliances, sockets and other fittings at home. During treatment, more and more blocks have been removed, until only the bottom blocks are left in the form of the cooker. She says that she can now see that it would not have been possible to work with those lowest blocks at the beginning. The tower would have collapsed.

The future with OCD

How do you imagine your future, given the way your life is now?

She answers that if she can avoid stress and other illness, she feels hopeful, and adds: “It takes energy to work with OCD every day.” During treatment, she has got to know her OCD and now knows when it is possible for her to step back from activities so that she does not become overloaded and unnecessarily stressed.

She describes a new part of the process of coming to terms with OCD: the recognition that she may never become completely free of OCD. That she has to learn to live with OCD to the degree it is present now. This thought can make her sad, because her greatest wish was to become completely free and not feel OCD in her life. On the other hand, she is proud to have reached a point where she can even acknowledge that she may never become OCD-free.

At the same time, she expresses a clear wish to shape her future life herself.

Finally, I ask whether there is anything she would like to pass on to others with OCD, or to people who are considering treatment or are already in treatment.

“You cannot do it alone. You need support along the way. Either from a good therapist, a partner, siblings or a friend who understands what it is all about.”

She describes having someone to lean on as indispensable and emphasises the importance of that support person knowing something about OCD.