Living with obsessive-compulsive disorder

OCD is an unusual and sometimes frightening condition. Many people with OCD are afraid they are going mad and will completely lose control of themselves. This does not happen. OCD does not lead to other severe illnesses like schizophrenia, but for some people it can be just as disabling.

OCD wastes time and robs people of parts of their everyday life. Obsessional thoughts can interrupt concentration, making study or work difficult. If OCD is present in teenage years and early adult life it can interfere with relationships and people with the disorder may feel quite isolated. Without help or understanding you may lose close friends because you have no time for them, or because they cannot put up with your 'odd' behaviour.

Initially a person with OCD may hide their problems through fear or embarrassment. Or they may start making demands of others. For example, they may try to prevent their family or whanau from bringing anything that might be dirty into the house, or demand they wash their hands more than is necessary. When OCD is severe, the rest of the household is likely to be experiencing its effects.
 
If you live with someone who has severe OCD this will have a big impact on your life. You will want to encourage them to have therapy and stick with it, partly for your own sake. If the situation at home becomes very tense you will need some time to yourself so you remain healthy. If the going gets really hard for you, it might be important to seek out a friend, or a professional, in order to talk through your problems and get advice. It is important to remember that helping loved ones with OCD is hard work.

Living through OCD can be one of the most overwhelming, frightening, isolating and debilitating experiences a person can have. People may feel their world has fallen apart, that everything is black or nothing makes sense. Worse still, people experiencing OCD often lose hope or the belief they can recover and lead a worthwhile life. But people who have come through episodes of mental illness are able to look back and see how temporary their loss of hope was. Everyone with mental illness can lead a worthwhile life, even if it is not quite the life they had planned.

Discrimination and stigma

Many people feel ashamed of their OCD and often try to hide it as they can sense other people's fear and prejudice. Media coverage can give the wrong impression that people with mental illness are likely to be violent.

Workmates and friends may turn their backs on a person they know who has mental illness. Even families and whanau and mental health workers can be over-anxious or controlling about lives of people with OCD. None of this helps. Sometimes the discrimination feels worse than the illness itself.

Support and information

People with OCD often do better if they seek support people who are caring, non-judgemental and who see their potential. Some get their best support from others who have been through the same kind of experience. Other people find a counsellor or another type of mental health worker who is supportive. Or their friends and family or whanau may offer good support.

People with mental illness can make more informed choices if they educate themselves about their condition and the types of treatment and support that are available. It's also useful to know about your rights.

Using services

Many people with OCD, sooner or later, go to see their GP or a counsellor or are referred to mental health services.

If you fear you might harm or kill yourself it is vital that you seek help immediately.

Sometimes it is hard for people with OCD to seek help because they feel ashamed and want to hide their distress. Acknowledging they have a mental health problem and need help can be very scary. People with mental illness often say the best services are ones where they are listened to, treated as equals and are given support or treatment that works for them. Otherwise, the service is unlikely to meet their needs.

Recovery

Many people with OCD make a good recovery. But even if you continue to experience it, you can still live a happy and worthwhile life.

Important strategies for recovery

•  Learn about obsessive-compulsive disorder and the treatment options. Health professionals and others involved in helping you should provide information in a way and at a pace that is comfortable for you, and, if applicable, your family or whanau.
• Take an active part, as far as possible, in decisions about treatment. Being involved in decisions is the best way to ensure you can make informed choices about what is best for you.
• Have the continuing support of family or whanau and friends who know about the condition and understand what they can do to support you. Get treatment and support from people you trust, who expect the best for you and are able to accept how you are at any time. Involve family or whanau, friends or other important people in your treatment programme if you wish.
• Find the ways of coping that work best for you. These are different for each person, but are a critical step towards helping overcome OCD.
• Have the opportunity to get support from culturally appropriate self-help groups that can give you information and support. Learning that others have this problem can be a great relief if you have been keeping it all to yourself.
• Try not to give in to your OCD. This is because the more you repeat your compulsions and rituals, the more they grow.
• Do not take alcohol or illegal drugs to reduce your anxiety. These will not cure your OCD and you may become addicted to alcohol or develop other alcohol or drug-related problems.
• Talk to your health professional if you are considering stopping treatment and work together with them to find some compromise that will ensure continuing wellness, but address any concerns you may have about the treatment.

Family or whanau views

Families and whanau often experience real grief, isolation, powerlessness and fear as they witness their loved one struggling with OCD. During a crisis they may find that they cannot understand the perso''s feelings or behaviour. Even after a crisis they may find their relative withdrawn or hard to be around.

Their feelings for their relative can swing from compassion for their pain, to grief at the loss of the person they once knew, to hostility towards their relative for disrupting their lives.

Discrimination and stigma

Families and whanau may feel shame or embarrassment about their relative. They may shut themselves off from their friends and neighbours or feel these people are avoiding them.

Support and information - family and whanau

Families and whanau often feel drained and stressed and need support to look after themselves as well as their relative with OCD. Their other family or whanau relationships can get neglected when the needs of the person with OCD have to take priority.

There are several ways families and whanau can get support. They can get in touch with other families and whanau who have had similar experiences. Some mental health services provide good support options for families and whanau.

Experience with services

Families and whanau frequently find that services do not listen to their views about their relative. Professionals may not always give families and whanau any information about their relative, particularly if they are an adult and don't want their family or whanau to know the information. Ideally families and whanau who are involved in caring for someone with OCD need to be able to communicate freely with professionals about their relative.

Recovery

Most families and whanau want to help their relative recover. Unfortunately, sometimes the person with mental illness blames their family or whanau and does not want them to be involved in their care. If families and whanau can share information, skills and support with their relative and the professionals who look after them, the likelihood of recovery is much greater.

Important strategies to support recovery

Family, whanau and close friends of someone with OCD have found the following strategies important and useful.

• Learn what you can about the disorder, its treatment, and what you can do to assist recovery. Sometimes the person with OCD finds it difficult to explain to others how hard it is for them, or they have trouble understanding what is happening to them and their behaviour. If you can learn about OCD then you can understand the pain your family or whanau member or friend feels and how difficult it is for them to do things that seem simple to the rest of us.
• Do not blame the individual for having OCD. You are most helpful if you can be sympathetic without going along with any unrealistic demands.
• Understand the symptoms for what they are, do not take them personally or see the person as being difficult or fussy.
• Be encouraging but also accept that change will probably be slow. Praise any progress and accept there will be some bad days when the person needs more support.
• Find ways of getting time out for yourself and feeling okay about this. It is critical to do what is needed to maintain your own wellbeing.

See also: OCD; OCD - treatment

Support groups

See the support organisations (which include helplines) under Further information and support below.

Original material provided by the Mental Health Foundation of New Zealand, 2002. Edited by everybody, June 2005.