Carers

Supporting a person with OCD can be very difficult but we can help.

OCD places a formidable burden and stress on family members, who often become involved in the rituals or avoidance behaviour of the person with OCD to pacify that behaviour. Some families or relatives have a high tolerance for inappropriate behaviour and can cope well, but for others it can be a very difficult and stressful experience which can vary enormously depending on the circumstances of each individual family and the extent of the demands made on them.

For the person with OCD, the disorder impinges on all aspects of life and causes significant interference with social and occupational functioning. It can also have the same effect on families of sufferers. However, the effect on individual family members may vary, especially if a member becomes involved with the rituals. The stereotypical rituals commonly performed include washing, cleaning, hoarding, checking, repeating actions, order, mental listings and rearranging in one’s mind certain words or phrases. The person in your family with OCD may also have different rituals, as people are all different.

Although there is such a prevalence of OCD, it is inconsistent with other conditions in that there is little awareness of it and little seems to be done about it. Perhaps the rates have been underestimated because of the stigma attached to mental illness. Often sufferers are ashamed of their symptoms and will not admit to them; secrecy can often be part of OCD.

The medical profession has often considered OCD bizarre and as such assumed it to be rare. Families are often reluctant to talk about OCD due to the stigma attached to mental illness. Clearly OCD will have an effect on the sufferer, but it can be difficult to understand the effect it can have on their families. OCD is all-encompassing and all family members are inextricably involved with the sufferer’s illness.

More than 80% of families have suffered disruption to their personal life and to family social life. For many families, the burden of care can fall mostly to one family member. Disruption can take many forms, from demands to participate or cooperate with rituals to domination of almost every action in the home. Demands can often be accompanied by shouting and bad temper and in some cases with violence. It is difficult to imagine the great stress on the physical and emotional well-being of family members.

Giving in to demands and cooperating with rituals can lead to a set of oppressive rules. The consequences of this can be serious and as such may require appropriate treatment and support for the family members affected. Family members may risk neglecting their personal needs and struggle with feelings of guilt, helplessness and hopelessness. OCD rituals and obsessions are diverse and varied and there are no rules about what form they can take.

There is no doubt that OCD affects relationships. There is often a feeling of shame and isolation as well as great sadness about how relationships have changed. Carers and families often talk about a sense of ‘wasted lives’, and refer not just to the life of the sufferer, but their own as well. Before the onset of OCD, sufferers, families and individuals had often functioned at high levels at school and college, socially and at work and there is the sense that not only do they now have to cope with an illness, but with this sense of sadness and loss as well.

Relatives often make comments such as:
“We used to be so close”, “It’s like the son I had is gone. I sometime see glimmers of him but mostly it is like living with a different person. I just don’t know who he is any more”.

Other descriptions include: “a living bereavement”,
“being in a different world apart from reality”. Some avoid friends and family because of the pain they feel when they see others enjoying the many good events and normal milestones of life. Comments include: “I can’t stand it when I am invited to a wedding or a party because I am so jealous”, “What do I have to say about my son/daughter/husband/wife – that he/she is a perfect partner because he/she decontaminates everything and everyone that comes to the house”.

The examples and comments above illustrate some of the ways the emotional lives of OCD families are affected. There is some similarity to how the lives of the families of people with other ailments such as alcoholism are affected, but it seems that there is less awareness of the effects of OCD on the family and consequently less effort to treat it despite the above-mentioned high prevalence rate. It is the task of mental health professionals to help the families of OCD sufferers as well as the sufferers themselves. The stress and suffering of families is a natural response to the highly unnatural demands placed on them by their mentally ill loved ones. Relatives are not bad people, they are sensitive and people who have empathy and compassion for their afflicted relatives. Often they sacrifice their own lives to help the ill person.

However much you like or love the person you are caring for, the emotional and physical demands of caring can be extremely stressful. Things can be particularly difficult if you live with them and you feel you have no time to relax and unwind. Everyone reacts differently to the stresses of caring. But when carers get together, they often find they share many of the same feelings. Some of the most common feelings carers describe are: Frustration, Resentment, Guilt, Anger, Fear, Loneliness, Depression.

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