Taking care of yourself as a relative in everyday life with OCD

OCD is a serious disorder that often affects everyday life for the whole family. As a relative, you may find that you forget yourself and your own needs. When you are close to a person affected by OCD, there are often many worries, questions and frustrations that press in. In this article, we will shed light on some of the questions and difficulties you may meet as a relative, and on how you can remember yourself in the middle of everyday life with OCD. As part of this, we will look at accommodating behaviour, often referred to clinically as family accommodation, and how you can work with it in practical terms in everyday life.

The article is primarily aimed at relatives where the person affected by OCD is at least 13-15 years old or older. This matters when we talk about the relative’s role, because with younger children you will often have a more treatment-oriented role, as a younger child cannot independently take part in a course of treatment.

The question of why

The big question of why a family is affected by OCD or another mental disorder can take up a lot of space for relatives. As human beings, we search for explanations and meaning, so it is natural to look for an explanation for OCD and for why the family has been affected. One of the questions we often meet in parents of a person affected by OCD is whether it is their fault that their child has developed OCD. It is a very natural reaction to try to place blame somewhere, and when there is no obvious reason, people often look inward and place the blame on themselves. This is a heavy burden to carry, especially because there is often no single explanation for why OCD develops. The development of OCD is complex, and any explanation will always include genetic, biological and psychological factors. In other words, it is a combination of several different things, and blame cannot be placed on parents or on any other single factor. This is important to say out loud as a relative, because many people carry both guilt and shame over something that cannot be attributed to them.

What is my role?

As a relative, you will often place a great deal of responsibility on yourself for making the person affected by OCD well again. One of the worries that often takes up a lot of space in this context is the question: “Am I doing the right thing?” Here, it is important to become clear about your own role as a relative. Fundamentally, the relative is first and foremost a parent, partner or sibling, depending on the relationship you have with the person affected by OCD. You are therefore not the therapist, and you should not take on the therapist’s responsibility. Your primary responsibility as a relative is to be a support for the person affected by OCD, both in ordinary everyday challenges and during a possible course of treatment. It is important to hold on to your natural relationship with the person affected by OCD and to focus on what your relationship was built on before OCD appeared, because everything can easily come to revolve around OCD. Often, the person affected by OCD can also feel that their relatives only see the OCD and not the person behind it. Perhaps this knowledge can free you as a relative to dare to forget OCD a little and sometimes do things that make you laugh and shift your thoughts to something else. This may be one of the best things you can do as a relative, both to help the person affected by OCD and to take care of yourself.

Remembering yourself

The fact that OCD often comes to dominate everything also means that you can forget yourself as a relative. This is especially true for parents, who are in a vulnerable position. The problem arises when the child’s OCD takes up so much space that you no longer have energy for yourself or care for yourself, and you repeatedly have to push your own needs aside. You can manage this for a period of time, but in the long run it is not sustainable. To be able to support the person affected by OCD over time, you need to take care of yourself and hold on to some of what gives you energy, joy and courage. If you are already in a situation where you have put yourself completely aside for a period of time, it may be time to find your way back to yourself, your joy and your needs. This can be difficult, and as a relative you may feel that you do not have the right, for example, to go out with friends and leave the person affected by OCD at home. Here, it can help to take small steps and slowly give yourself “permission” to do some of these things. Just as the process of forgetting yourself can happen over a long time, it can also take time to find your way back to some of what was there before. And that is completely okay, as long as you are aware of it.

Can you talk to others about it?

An important part of taking care of yourself as a relative is talking to someone about what is difficult. But how do you do that when other people do not understand it? And what do you do if your family member affected by OCD has forbidden you to talk about it?

It can be very difficult to begin talking about it, especially if the person affected by OCD does not allow it. Here, it is especially important to remember yourself and your own needs, and to give yourself permission to talk to others about it. However, there can be a difficult balance between being unnecessarily closed because of the demands of the person affected by OCD, and on the other hand being unnecessarily open in your story, where you may almost expose the person affected by OCD to both family and friends. It can be a good idea to choose one friend whom you trust and talk to about it. This can also protect you, so that all your relationships do not come to revolve around OCD. It already takes up enough space. Often, you may also experience friends, colleagues and family members offering a lot of advice about what you as a relative can and should do. Even though they do so with the best intentions and a wish to help, it does not always actually feel helpful. It can often lead to frustration and guilt in the relative, and their well-meant hindsight can do more harm than good. Many people feel that they need to provide solutions to the problems being described, while as a relative you may more often need to be met, listened to and given space. That is why choosing one person to confide in can be a good idea, because it also makes it easier to clarify what you need from the conversation. You can, for example, say that the person does not need to solve the problem or fully understand it, but simply needs to listen and make space for what you are bringing. In that way, both people can relax in the conversation, and you as a relative can share some of the thoughts and feelings that are difficult to carry alone.

How did we end up here?

“How did we end up here?” is a question parents or families may ask themselves in frustration over how much OCD can suddenly take up in the home and in everyday life. Again, it is important not to blame yourself, but rather to look ahead and believe that things can get better, even when the situation looks hopeless. One thing that can help you move forward is understanding the process from when OCD began until now. During this process, you as a relative will probably have taken part in many different types of OCD-related behaviour, where you have adapted your own behaviour and your everyday life to OCD in order to help the person affected by OCD. This is called accommodating behaviour. It is often something relatives are not aware of until they suddenly realise that they have arranged themselves and their everyday life around OCD. It is therefore not something you should blame yourself for as a relative, but something you can begin to change once you have become aware of it. There are many types of accommodating behaviour. Some of these are described in the following section.

When you accommodate OCD

Accommodating behaviour is a general term for behaviour where the relative adapts to OCD’s demands. Accommodating behaviour may be necessary to make everyday family life work, but because of the nature of OCD, the unfortunate consequence is that the behaviour maintains and may even strengthen the symptoms of the person affected by OCD. This also creates a number of dilemmas about when it is okay to accommodate and when you should say no.

As a relative, you often focus so much, and quite naturally, on the person affected by OCD that it is difficult to also pay attention to your own behaviour. Many relatives therefore describe finding themselves in a situation where they have adapted to OCD’s demands without knowing when it started or how to get out of it again. There is important learning in being able to identify your accommodating behaviour. Below is a case based on a family of a person affected by OCD and their everyday life. Try to identify the different forms of accommodating behaviour in the case.

When identifying accommodating behaviour, it is important not to judge yourself. Remember that accommodating behaviour is rooted in care for the person affected by OCD. That is also why a number of dilemmas arise where there is not necessarily a right or wrong answer. As a parent in particular, you will not be able to avoid being very supportive and therefore sometimes assisting. Try also to identify such dilemmas in the case.

Case - the Jensen family

The Jensen family consists of mother Lone, father Lars and the children Mille and Magnus.

The family lives in a detached house on the outskirts of Odense. Both parents are schoolteachers and used to be very involved in the local community. Mille is the oldest child and has just returned home from boarding school. Magnus is 14 and attends the local independent school. He has recently been diagnosed with OCD. Magnus has a pronounced fear of dirt and bacteria, which results in long rituals every day.

The following case describes a completely ordinary day in the Jensen family.

06:00: Everyone in the family is up. Mille, who has to take the bus to upper secondary school at 07:00, is frustrated because the bathroom door is locked. Magnus has just gone into the shower, and Mille knows that it will take an hour before he is finished. She goes into the kitchen, where her parents are sitting at the breakfast table. “Can you not tell Magnus to hurry up so I can have a shower before I have to catch the bus?!” she asks her parents irritably. Lars answers, “You know that will not help. Magnus will just get angry, and we do not want to pressure him.” Mille rinses her face under the kitchen tap and goes to her room. Fortunately, she has removed all her makeup from the bathroom and moved it to the mirror in her own room. Lone and Lars do not want to move their things from the bathroom, so they get up at 05:30 to make sure they can both shower in time.

07:00: Mille and Lars have left the house. Magnus has just come out of the bathroom. He sits down at the breakfast table. “Do you think I am clean enough, and that there are no bacteria on my body?” he asks Lone. “I am sure of it,” she answers reassuringly. Lone washes her hands thoroughly before serving breakfast to her son. While Magnus eats, Lone makes sure to wipe all surfaces with a wet cloth.

08:00: Lone has sat down in the car and is waiting for Magnus. He has to be at school at 08:15. Fifteen minutes later, Magnus comes out. He is convinced that he has bacteria on his hands, and that is why it took extra time to get out the door. Lone reassures Magnus that he is completely clean, which calms him. Lone drops Magnus off and then drives to work. She has made an agreement with the headteacher that for a period of time he will arrive later.

16:00: Everyone in the family is home again. It is Friday, and Mille would like to have a friend stay overnight. Magnus protests. He does not want other people in the house because he fears contamination. Lone and Lars persuade Mille to sleep elsewhere. It has now been several months since they last had guests in the house.

18:00: The family is gathered at the dining table. Before they eat, Magnus demands that everyone reassure him that they have washed their hands thoroughly. They answer affirmingly, knowing that they have not done it nearly as thoroughly as Magnus wants.

20:00: Mille has gone to a friend’s house, Lone has gone to bed, and Lars and Magnus sit down in front of the television and watch a film together.

Morning at 07:00

The whole family is affected to a high degree when a family member is affected by OCD, and accommodating behaviour can lead to many changes in everyday family life. At the beginning of the case, for example, we hear that the parents are no longer involved in the local community. It is easy to imagine that the energy it takes to be part of the local community is now being used at home and on the person affected by OCD.

When we go through the case, we see that the accommodating behaviour is already present from the morning. The older sister has chosen to move her makeup from the bathroom so she can get ready before she has to catch the bus. She tries to get her parents to react to Magnus’s long shower, but because they do not want to pressure him, they avoid the confrontation. In that way, they accommodate OCD’s demands. At the same time, it seems that they are unsure how to handle the situation, since they clearly have experience that confronting him does not work.

Good advice in a situation like this is to talk with Magnus at a calmer time and make clear agreements with him, for example about how long he can spend in the shower, where he himself agrees to the arrangement.

Later in the case, we see that the parents have an idea that they are resisting OCD’s demands by not moving their things from the bathroom. On the other hand, they get up much earlier to finish before Magnus needs the bathroom, which appears to be accommodating behaviour.

After Mille and Lars have left, Lone monitors Magnus when he washes his hands. Monitoring, as accommodating behaviour, has several purposes. First, it can be a way of limiting the routines of the person affected by OCD, because the relative, through monitoring, functions as reassurance that, for example, the handwashing has been done well enough. In the case, it helps Magnus limit the number of times he washes his hands, which is a good thing. However, monitoring can very quickly become unhelpful. In the case, the mother’s monitoring has become a safety behaviour and a dependency, because for Magnus it is about making sure he has done it well enough. This creates a dilemma: monitoring can help limit the amount of handwashing and perhaps make everyday life easier for the whole family, but at the same time it is unhelpful because Magnus becomes dependent on relatives assisting him, and this can strengthen the OCD.

Afterwards, Magnus asks Lone to reassure him that he is clean enough.

Many relatives experience that the person affected by OCD asks them for reassurance on questions related to their OCD theme. Reassurance consists of verbal assurances that something is okay, correct or harmless. For a person affected by OCD with doubt and checking behaviour, this may be reassurance that everything is switched off and locked. A person affected by OCD who worries about dirt and bacteria, like Magnus in the case, may ask the family several times a day whether everyone has remembered to wash their hands before touching food, the fridge or the person’s clothes. Reassurance gives the person affected by OCD short-term relief, but soon doubt returns and worrying thoughts arise again. As a relative, you often take part in this type of accommodating behaviour to help the person affected by OCD regulate emotional discomfort, and because it can feel wrong to reject the person affected by OCD in these questions. This often leads to a vicious cycle (see Figure 2), resulting in even more reassurance-seeking questions to relatives. Over time, the number of reassuring answers can become so extensive that it places an extremely heavy burden on the relative. Here, it is important to take care of yourself and perhaps begin phasing out this accommodating behaviour. This can be done by making an agreement with the person affected by OCD to limit the number of questions and answers over a period of time. For example, you can work with three question cards that the person affected by OCD may use during a day. In this way, the person affected by OCD is also challenged to limit the OCD and to tolerate uncertainty to a greater extent.

Lone also participates in the rituals by washing her own hands for Magnus’s sake and wiping all surfaces with a cloth. In this way, she sends Magnus a signal that there is good reason to worry about how clean things are.

Relatives often participate to some extent in OCD actions, for example by helping with excessive cleaning, as Lone does in the case, or through assisting checking behaviour, where the relative helps check the body for signs of illness or whether the door is locked.

Many relatives are not at all aware that over time they become entangled in this type of accommodating behaviour until they realise that they spend a lot of time on it every single day. Behaviour that has developed over a long period of time naturally cannot be phased out immediately. It is important that you as a relative are aware of this and are prepared for the phasing-out process to take time and to be graded step by step in agreement with the person affected by OCD.

Phasing out always requires a great deal of patience.

Morning at 08:00

Lone again reassures Magnus that he is completely clean, which calms him. As already mentioned, it makes instinctive sense that as a parent you reassure your child, but when dealing with OCD, this will strengthen the need for reassurance and therefore lead to more reassurance-seeking questions that require more reassuring answers (Figure 2). This is a typical dilemma that can be very difficult to handle as a parent.

Lone has changed her working hours and in this way accommodates OCD’s demands, but sometimes this may be necessary to make everyday life work. In some cases, there is no obvious solution to these dilemmas, and in order for the family’s everyday life to function, there will be situations where accommodating behaviour cannot be avoided. Here, it is important to be aware of what behaviour you are participating in so it does not develop further, while also being compassionate towards yourself in these areas so you avoid guilt and judgemental thoughts.

Afternoon at 16:00

Magnus does not want guests because of the OCD thoughts he has, and the parents accommodate the demand by persuading Mille to sleep elsewhere. This accommodation is unhelpful for two reasons. First, Magnus is confirmed in his OCD thoughts because the parents send a signal that having guests can be dangerous. Second, Magnus does not learn that he does not become ill from it. In this way, the family maintains the fear by accommodating OCD’s demand for avoidance.

It has been four months since the family last had guests, which is not unusual among families affected by OCD. When guests are no longer invited, this happens either as a demand from the person affected by OCD or because the family simply cannot manage it. If it is due to demands from the person affected by OCD, and therefore demands from OCD, it is important that the family becomes aware of this and then tries to change it, especially if it affects other family members and their needs. In the case, it affects Mille, the sister, who is likely to be deeply affected and in need of change. It is important to remember the siblings standing on the sidelines, because they often pay a high price when everyday family life is arranged around OCD. In the example above, one option could be to make an agreement with Magnus that, for example, he can stay in his room or in another part of the house, where he can be reassured that the guests will not enter.

There is no definitive checklist of the different types of accommodating behaviour or how to work with them. The case above is simply one example of the accommodating behaviour often seen in families affected by OCD.

Finding a way through OCD

Accommodating behaviour is one of the ways in which OCD interferes with everyday life and affects the relative in such a way that they have to put themselves and their own needs aside.

Finding a way through this starts with becoming aware of the patterns and behaviours you as a relative have adapted to OCD. In general, knowledge about OCD is an important tool. Through knowledge, relatives can get answers to some of the worries and questions they have, while also understanding the person affected by OCD better and perhaps becoming aware of their own unhelpful behaviour.

If you find that, as a relative, you have adapted your everyday life and your behaviour to OCD, it is fortunately possible to do something to help yourself out of it again. This can take time and must be done gradually, just as OCD has gradually been allowed to take up more and more space. You therefore cannot expect to turn the situation around immediately.

One thing you can do is choose one type of accommodating behaviour that you want to stop. Here, it is important to talk with the person affected by OCD and make agreements about how and when this behaviour should stop. It is important that you as a relative remember yourself and push back against the sometimes unreasonable demands OCD makes. Here, it is central that the family makes good agreements and sets clear boundaries. Agreements should always be made at times when OCD is not critical, and when the person affected by OCD is open to negotiating them. This can feel like a difficult process, but the most important thing is that you are on your way and that you are actually beginning to say no to OCD and take care of yourself.

In addition to working with accommodating behaviour, you can also work on reintroducing some of the activities or similar things that used to be important to you. You can also do this gradually, perhaps with help from friends to get out or get started.

Self-help groups can often be a great help for relatives. These are arranged, among others, by OCD Klinikken and the Danish OCD Association. The groups are free to attend and are primarily used to exchange experiences, giving you the opportunity to put words to what is difficult and meet other relatives struggling with the same challenges. Being a relative is a difficult task, and it is therefore important that you do not stand alone with your thoughts, feelings and frustrations in this process.

If you need more concrete help, conversations with a psychologist who has experience with OCD can be beneficial. This can also give you useful knowledge about OCD, which can help you understand and act appropriately in relation to OCD.