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Advice for Family, Friends and Carers

Our intention is that this guide will help to clarify information about OCD symptoms and treatments, as well as offering hope and encouragement for those affected by this very treatable disorder.
Families and carers have an important role in giving practical and emotional support to someone with OCD. If you care for someone with OCD, finding out about the condition, and understanding what your loved one is going through, is perhaps the most important thing that you can do.

In order to help you with this, your loved one's healthcare professional should give you some information about OCD and how the treatment will help, but, if not, this website is a good starting point.
When tackling OCD, knowledge is power! The more you learn about OCD, the better equipped you will be to deal with its many faces and the problems that it will cause your loved one and the rest of your family.

Early intervention is vital; there is considerable proof that the sooner OCD is identified and treated, the more chance there is of a better recovery. So if you think your child may have OCD then the first thing to do is to speak with their GP (if they are a young child). With older children / teenagers, they might wish to speak with their GP alone, but you should encourage them to seek help.

Whilst awareness of OCD is gradually increasing, there are unfortunately still some GPs who have a very limited knowledge of the illness. OCD-UK have created a GP ‘Ice Breaker’ which you may wish to print off our website and pass to the GP, it explains what OCD is, and that you know your child needs to be diagnosed and offered treatment of Cognitive Behavioural Therapy (CBT).

For many children and young people, that feeling of being alone, and the only one suffering, can be immense and even make the OCD seem worse.  It is for this reason that we have produced a series of information guides for young people which helps show them that, in actual fact, they are not alone at all.  These guides can be downloaded off our website, or requested by sending the appropriate sized stamped addressed envelope to us.

Your GP can then arrange a referral to your local Child and Adolescent Mental Health Services (CAMHS). Here you and/or your child will be able to discuss their symptoms with a health professional who knows how to diagnose and treat OCD.

In some cases the person with OCD will refuse to see the GP or seek treatment, or may not even admit that there is a problem at all. This action may cause even more distress for those around. In this case you could offer educational materials to the person, maybe leaving them around the house in the hope that he/she will pick them up to read at a later stage.  Show them the OCD-UK website, and the personal stories from other people with OCD to show them that they are not alone, and that there is no need to be ashamed or embarrassed.

Sometimes people need to make their own individual journey, at their own pace, to the place where they are ready to talk.  Other times they may well need encouragement and even pushing to seek help. You know your loved one more than anyone else, so you will know the best approach to take with them.

During the assessment with your loved one, the healthcare professional may also, with permission of your loved one, ask you some questions about the OCD.

You may be asked how you deal with your loved ones OCD.  For instance you may feel you have to take part in your loved ones compulsions or rituals, even though you may not want to. Whilst you may feel that when you love someone it is the natural thing to do to help lower the anxiety that the OCD causes, what we know is the more you collude with their OCD, the more you are reinforcing the OCD long-term.

You may be involved in checking doors and locks for your loved one, or providing clean towels and washing for them, or preparing special meals, or constantly answering reassurance provoking questions over and over again. With OCD, once is never enough.

By participating in OCD behaviours it strengthens the OCD by reinforcing the obsessive fears, and protecting your loved one from the negative consequences of facing the obsessions and compulsions.  It can also decrease their motivation to seek treatment.

It is also important to remember that OCD is nobody’s fault, not yours, or your loved ones.  What is important is that you agree to work together to face and tackle the OCD as a team.
Very young children may be told to imagine their OCD to be a bit like a bully, trying to get them to do things they don’t want to do.  Part of their homework may be to draw a picture of what they think their OCD bully looks like. It can be helpful to refer to the OCD as the bully, so your child does not feel they are to blame for their illness. By then referring to the bully’s name, rather than the loved one’s OCD, it helps identity the illness to be this external entity and your loved one will hopefully feel less to blame for having the disorder.

This approach may be helpful for adults with OCD too.  Naturally the illness will make everyone feel frustrated and angry and it is natural to blame each other sometimes, but this really does not help anyone. So if you are a partner of someone with OCD, perhaps when you need to point out the OCD is causing problems you could make a reference to “two’s  company in this relationship, but three is a crowd, so can we leave OCD outside today”. This light hearted approach may go a little way to ensuring your loved one does not feel at fault for the OCD quite so much,
It may also help to prepare yourself for the possibility of your loved one disclosing symptoms of which you were unaware. It may be helpful to remember that OCD can have many symptoms. When someone with OCD first feels able to describe symptoms, remember that these are OCD thoughts. Intrusive thoughts often contain the sufferer’s most feared and dreaded thoughts and as a result their very nature may involve fears connected with crime, violence or sexual content. Remaining calm and accepting will help encourage your loved one to talk openly.

Facing up to OCD can be scary. People with OCD may naturally be apprehensive about resisting or not completing rituals. It may be helpful to remind the sufferer of what they are hoping to achieve out of CBT. Keeping the target in sight may help everyone to remain focused on recovery. When learning any new skill, practice and persistence are key ingredients.

CBT requires dedication from the sufferer and support from the family.

‘Reassurance’ is a term often used which means ‘accommodating’ the OCD, i.e. giving in to it, going along with it and following its demands. For loved ones it is often so difficult to decide how to support the person with OCD whilst at the same time not colluding with the disorder.

When a person with OCD is really struggling and is distressed, it is a natural reaction for you to want to stop that pain. It is easy to say, “no, your hands are clean and do not need washing again,”, “yes, the doors are locked and we are all safe” or “no, of course you did not upset me” but the danger is that the next time an obsession comes the sufferer will look to you for the same reassurance, rather than trusting their own instincts and standing up to the OCD. It would be better for you, the FFC, to ask the  person with OCD to think themselves about what it is that is making them want to wash or check again.

Reassurance does reduce the sufferer’s anxiety for a short time but unfortunately has a detrimental effect in the long term. If the person with OCD allows the anxiety to rise then they will gradually learn that the anxiety disappears on its own, given time. If, however, they use reassurance to reduce the anxiety then the next time the obsession and resulting anxiety will be just as strong, if not stronger.

As a general rule you should never collude with the OCD demands.  This allows the person with OCD to avoid the feared situation and offers them reassurance, which in the short term lowers their anxiety, but in the long term reinforces the fear.  But you know your relative; you will know when to push them hard, and when to give them an emotional arm around the shoulder and a hug for support.  Emotional reassurance that they are not alone is sometimes the best reassurance of all.

Sometimes when OCD reassurance is being requested, like “did I hurt you” or “did I run someone over” instead of answering “no, of course not”, which would be colluding with the OCD, if you feel your loved one is strong enough, a better response might be to either offer the emotional hug, or respond by calling the OCD's bluff by answering in a joking way. A good response might be, for example, “two’s enough in this car, there is no room for a third OCD person thank you very much” or “sorry, I am not playing the OCD game today thank you kindly”. And of course, remember, answering with a smile and loving arm around the shoulder will make such a difference.

However, in reality there will be occasions where offering the sufferer reassurance is just completely unavoidable. Perhaps it has been a bad day and it’s late at night for example, and you're feeling tired. In these circumstances offering reassurance on rare and extreme occasions may not necessarily be the wrong thing to do. It is important that you don’t beat yourself up about it if that happens, but instead get a good night’s sleep yourself and the following day speak with your loved one and their therapist about alternative techniques for dealing with that situation in the future.

It may also be a good idea to sit down together as a family, ideally on a good day, and discuss with your loved one that together you are all going to fight OCD, and make them aware that when you do challenge the OCD, you are challenging the illness and not them.  Perhaps make agreements, draw up a verbal ‘contract’ that whilst you are all waiting for the treatment to begin, for now you will all agree to compromise.  So perhaps just for now the family will allow the OCD to impact on certain areas of the house, perhaps your loved ones bedroom or the bathroom, but in the communal areas, like the living room and kitchen, normal life will be kept as normal as possible for the rest of the family.

Remember that OCD symptoms may wax and wane, usually in conjunction with normal everyday stresses at home / school / work, but also in response to other traumatic life events. On some days the sufferer may be able to deal better with symptoms than on others. Each sufferer needs to overcome problems at his/her own pace, even though this may be a lengthy process.

Of course there will sometimes be bad days and setbacks.  That is inevitable.  But on those days, if allowances are made for the OCD, it is important not to beat yourself up, or blame anyone, but together as a family sit down and learn from it.  Look at where the setback occurred, and if anything can be learned from it, and discuss it with the healthcare professional at the next session.

If you are a parent of a child with OCD, the decision about whether or not to inform your child’s school will depend on your own and your child’s preferences, as well as the severity of the OCD.

With very young sufferers there is often little attempt to hide the OCD symptoms and, as a result, teaching staff may already be aware of them. Older children and adolescents may be better able, and feel under more pressure, to hide the disorder from friends and teachers.

However, your son or daughter may be under tremendous stress because of the OCD and exams, and informing the school could be a beneficial and supportive move. As a result of OCD your child may also be having difficulties completing homework and / or having problems with developing / maintaining social relationships.

It is also important however, that the child feels involved in making the decision whether or not to inform the school.

Regardless of the age of your child, it might be useful to provide the school with some information about OCD. We have included a section for teachers and other school staff at the back of our information guide for parents of children with OCD. This guide can be downloaded off our website, or requested by sending the appropriate sized stamped addressed envelope to us.

Seeing your loved one suffering from OCD can be extremely upsetting, and sometimes distressing, so it is important that you consider your own wellbeing and health whilst supporting your loved one.

It is also important that if you are the family member or friend who is closest to the sufferer you do not take too much on. It is vital to make time for yourself, and, if need be, seek support for yourself. Sharing your worries and experiences with others who have gone through the same things can be a huge help. Support groups are a good way to feel less alone and to learn new strategies for coping and helping the sufferer. The OCD-UK online Bulletin Board forums also have a section specifically for family and friends, and are free to use at www.ocdforums.org. The vital thing to remember is that you must not take too much on your own shoulders and make yourself ill, because that benefits nobody.

Ensure that you speak to your GP or other health professional about your own feelings and needs; information or advice about what support is available to you should be discussed and/or made available.

Don’t be afraid to enjoy the occasional ‘OCD free’ day when they come along, and they will. Just occasionally the person with OCD may have a good day where the OCD seems less severe. When those days come along, enjoy them, have fun, lots of laughter, and worry about OCD later. Some days we all need a day off from fighting, and that is ok provided you have a long-term treatment strategy in place.

Obviously it depends on your family dynamic and individual situation, but as difficult as it may seem, it is not your sole responsibility to tackle the OCD, and you must avoid feeling overly responsible.  In order to look after your own mental well-being,  and in order to be able to offer your loved ones the long term support they need, taking a break every now and again will be the best for all of you. So if your situation allows for a non-OCD weekend, where you are able to head off somewhere different, then go for it!   It will most likely leave you feeling refreshed and ready for the OCD challenges that lie ahead of you.
Look after yourself, because if you don’t then you are no good to yourself or your loved one!

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OCD-UK is a non-profit making charity and not associated with any other organisation. Medical information is provided for education/information purposes only, you should obtain further advice from your doctor. Any links to external websites have been carefully selected, however we are not responsible for the content of these third party websites.