Obsessive compulsive disorder – help for families
Living with a person with obsessive compulsive disorder (OCD) can have a major impact on the family. The obsessional fears and compulsive behaviours that are symptoms of OCD can be difficult to understand, and may be disruptive to family routines and activities. It is helpful for families to find out as much as possible about the condition. Knowledge and understanding will decrease feelings of confusion and distress, and help to open up communication with the family member who has OCD.
Obsessive compulsive disorder (OCD) is characterised by recurring and unwanted thoughts, impulses and images (obsessions) and repetitive behavioural and mental rituals (compulsions). People with OCD are usually aware that their obsessions and compulsions are irrational and excessive, yet feel unable to control or resist them, leading to significant distress. Common obsessions include fears of contamination from germs, dirt or poisons, or fears of harm from illness or an accident. Common compulsions include excessive handwashing or household cleaning, and excessive checking of appliances, vehicles or buildings to ensure safety. OCD can take up many hours of a person’s day, and severely affect work, study and family and social relationships. Families may often become deeply involved in the sufferer’s rituals, and may have to assume responsibility and care for many daily activities that the family member with OCD is unable to undertake. It can be difficult, demanding and exhausting to live with a person who has OCD.
Get an accurate understanding of the condition
It is important, firstly, to get a correct diagnosis. Accepting that it is a recognised mental health problem, and getting a true picture of what it is all about, are usually the first critical steps towards effective treatment and recovery. Once the condition has been named, the family and the person with OCD can access many resources – books, videos and web-sites, that will provide insight and understanding about OCD, including specific aspects of OCD such as hoarding, obsessional thinking, and hyper-responsibility. This knowledge will eliminate many misunderstandings and concerns about this disorder – the family will learn that it is not caused by laziness, lack of will-power, bad parenting or trauma. Blame and guilt will be greatly diminished. A diagnosis will also open the door to the right sorts of treatment and community supports that are available. Knowing what the problem is and what can be done to help, can considerably reduce family members’ feelings of confusion, anger and fear, and bring some clarity and direction into a difficult and stressful situation.
Offer support and understanding
When you are more informed about OCD it will be easier to be supportive and understanding to your family member. You will realise that many of their behaviours that are irritating and demanding are actually symptoms of their condition. You will come to understand that people with OCD often feel compelled to repeatedly seek reassurance or to do a particular action over and over again, and that they feel they have little or no control over this. In fact, people with OCD often also feel frustrated and distressed about their need to act compulsively. It is helpful to be able to communicate clearly the difference between the sufferer’s behavioural symptoms of OCD, and who they are as a person – “this is not you – it is your OCD”. This will diminish the person’s feelings of guilt and low self-worth, which in turn will help to lower their levels of stress and anxiety. Other suggestions include:
• Encourage talking about the disorder, so that you can learn more about how it affects your family member and how you can be more supportive. However, don’t engage in discussions about the logic of the OCD – most people with OCD know their obsessions and compulsions are excessive and irrational.
• Encourage the person to seek professional help. OCD is generally not a condition that will go away without treatment. You can assist in locating an experienced therapist, and offer to be involved in their treatment program. In particular, if the OCD has had a significant impact on family activities, and you and other family members have been extensively involved in rituals and avoidance behaviours you will need to know the best ways to modify your involvement so that the treatment can be as effective as possible.
• It will help to break the secrecy about the OCD in the family. Encourage discussion about OCD as a common and treatable anxiety condition that is nothing to be embarrassed or ashamed of. Support the family member with OCD to be able to share something about it with family, relatives and friends.
• If you notice improvements, however small, acknowledge them and encourage the family member to reward themselves for their progress.
• Try to be patient, and maintain a non-judgemental attitude toward the sufferer – this will support them in focussing their efforts on recovery rather than dealing with anger and resentment.
• If their motivation wanes and they consider stopping treatment, remind them of the gains they have made.
Normalise family routines and reduce involvement in the obsessive compulsive behaviours
It is very easy for families to get involved in OCD behaviours because it usually seems like the only way to reduce the distress that the person with OCD is experiencing. Also, it often just helps the family to keep functioning if you can quickly respond to a request for reassurance or to check something, rather than dealing with the protracted anxiety, tears or arguments which can arise if you don’t do what is asked. It can be very difficult to reduce this type of involvement in a person’s OCD, especially when it has been going on for a long time. It is important to be aware that helping a person with their rituals, responding to requests for reassurance, or undertaking tasks that they want to avoid, are all behaviour patterns that help to maintain OCD and may create an obstacle to a person’s recovery if not modified or stopped. However, it is also important that family involvement in rituals is reduced in a very gradual way, and preferably as a part of a cognitive behavioural treatment program. Sudden stopping of all involvement could trigger overwhelming distress for the person with OCD, and lead to increased symptoms, high agitation and anxiety, and depression. Some suggestions include:
• Initiate discussions in the family about the compulsive behaviours which are impacting on family routines and time, and try to work out ways in which family participation in the rituals can be gradually reduced.
• Explain the reasons for reducing involvement to the person with OCD, and allow them to be a part of decision making about how this is achieved. Set realistic goals together, and ensure that all the family will abide by the plan.
• If the person with OCD is in treatment, offer to attend a session with them so that you can seek advice about how your efforts to minimise accommodation of compulsions can best complement the treatment program.
• Try to maintain normal household routines whenever possible.
• Focus on strengthening family connections and stability by maintaining positive family traditions and rituals – celebrating birthdays and anniversaries, having regular family dinners, reinforcing positive communication and behaviours – sharing, hugs, helping each other, and keeping up family activities – going to church, to the footy, taking the dog to the park etc.
Reach out and find support and help for yourself
If you live with someone with OCD, it is very likely that you will also need some support and help for yourself. Over time, OCD in the family can lead to everyone feeling isolated and alone. It is very important to maintain your connections and supports among your extended family and friends. If these support networks are limited, or unable to meet your needs, consider seeking out supports in the community. Some suggestions include:
• Contact a telephone helpline for families and carers of people with OCD and anxiety conditions;
• Attend a support group for families in similar situations;
• Attend education and skills groups for carers of people with OCD;
• Seek out information or workshops on stress management, relaxation and meditation, and healthy living;
• If your physical or emotional health is suffering, be proactive in getting some professional help for yourself – short term counselling and support can be obtained through your GP, local community health centre or a private psychologist;
• Take time out for yourself whenever possible, and try to maintain hobbies and outside interests.
When the person who has OCD refuses treatment
A person who has OCD may be reluctant to seek professional help. This may be because they are frightened by the stigma associated with mental illness, and that they might be found to be really ‘mad’ or ‘crazy’. People with OCD are also usually very afraid of having to give up their compulsions – as much as they don’t want to do them, they also feel that compulsions are absolutely necessary to their survival and that it would be impossible to stop them. Therefore, treatment becomes a terrifying prospect, and they may have little hope anyway that it would work. They may also fear becoming addicted to medications, ‘failing’ at the therapy, or showing themselves to be weak because they can’t deal with their problem on their own.
Suggestions include:
• Offer reassurance that OCD is a recognised and treatable illness.
• Assist the person with OCD to be fully informed about effective treatments for OCD. There is a lot of information available about evidence-based treatments for OCD – medication and psychological therapy, including how the treatments work, what is expected of the patient/client, how long it should take, what self-management strategies can improve recovery, and how these treatments have helped others with OCD. This type of information may help to alleviate many of the fears that people with OCD have about treatment.
• Ensure that you seek treatment from a professional who is experienced in treating OCD using evidence-based approaches – just like you would if you were obtaining treatment for a medical condition. The fears and worries that people with OCD have about treatment may be greatly exacerbated if they are exposed to an incompetent or inappropriate treatment service.
• Don’t try to bully or ridicule people with OCD into getting treatment – strong-arm tactics won’t work, and will only increase their feelings of powerlessness and failure.
• Stress that knowing when to seek help is actually a sign of strength, not weakness.
• Seek advice from professionals and support groups on your own, if necessary.
• Sometimes, despite your best efforts, you have to accept there’s nothing more you can do to encourage the person to seek help – in this case, you need to find avenues of support and strength for yourself.
• If you think your family member is in a critical situation, and needs immediate assistance to ensure their safety and well-being, call your doctor, your local mental health service crisis assessment team, or the police.