Support if you care for someone with OCD

We understand that supporting someone can be difficult as you may face relationship changes, you may find things that they say upsetting and you may worry that you are letting them down. Mind, a mental health charity, have a page about caring for someone with a mental health problem, that you might find is a helpful place to start. You can access this here. It might be difficult and confusing to hear that your friend or family member has OCD. There is lots of information and support available to you. 

Supporting someone with OCD might bring up some difficult feelings for yourself. You can contact your GP and tell them about how you are feeling, and ask what support they can recommend for you. 

Helplines

• You can talk to the Samaritans 24 hours a day on 116 123. 

• Call the Carers UK helpline from Monday to Friday, 9am – 6pm on 0808 808 7777. And use the Carers UK local support search – a tool for finding support in the area you live.

• Samaritans. To talk about anything that is upsetting you, you can contact Samaritans 24 hours a day, 365 days a year. You can call 116 123 (free from any phone), email jo@samaritans.org or visit some branches in person. You can also call the Samaritans Welsh Language Line on 0808 164 0123 (7pm–11pm every day).

• SANEline. If you're experiencing a mental health problem or supporting someone else, you can call SANEline on 0300 304 7000 (4.30pm–10pm every day)

• Campaign Against Living Miserably (CALM). You can call the CALM on 0800 58 58 58 (5pm–midnight every day) if you are struggling and need to talk. Or if you prefer not to speak on the phone, you could try the CALM webchat service.

• Shout. If you would prefer not to talk but want some mental health support, you could text SHOUT to 85258. Shout offers a confidential 24/7 text service providing support if you are in crisis and need immediate help.

• The Mix. If you're under 25, you can call The Mix on 0808 808 4994 (3pm–midnight every day), request support by email using this form on The Mix website or use their crisis text messenger service.

• Papyrus HOPELINEUK. If you're under 35 and struggling with suicidal feelings, or concerned about a young person who might be struggling, you can call Papyrus HOPELINEUK on 0800 068 4141 (24 hours, 7 days a week), email pat@papyrus-uk.org or text 07786 209 697.

• Nightline. If you're a student, you can look on the Nightline website to see if your university or college offers a night-time listening service. Nightline phone operators are all students too.

Mindfulness

You might find techniques such as mindfulness useful for reducing feelings of distress or worry in the moment. Some examples of how you can access this for free are:

Nicky Mouat, a Mindfulness based Cognitive Therapy Teacher with the Sussex Mindfulness centre at SPFT and registered mental health nurse, has some recorded practises that you can access here: Stream Nickymo music | Listen to songs, albums, playlists for free on SoundCloud

Calm, a an app for mediation and sleep, have free resources on their Youtube account such as breathing exercises: (97) Calm - YouTube

Self care

You may find that taking some extra time to do things that you enjoy, and to take care of yourself can help. This is because we may feel guilty about taking time to do this, or feel we don't have the time to do so when we are caring for someone. The following are some ideas that don't cost any money, that you can do today. 

• Take a break, and take time for yourself. 

• Try to improve your sleep, there are some free apps that you can download to help you with this. 

• Spend time in nature.

• Spend time away from screens. 

• Find ways to learn and be creative to try and relax and reduce stress.

• Think about what you can and can’t control as you cannot be completely responsible for someone else’s mental health.

• Take things one step at a time. Be patient and forgiving with yourself.

• Try not to be hard on yourself. Sometimes carers can feel guilty for resisting to help someone with compulsions, or feel guilty for not resisting but it is important to remember that managing OCD takes time, practice and patience and all you can do is try your best.

Support groups

Join a support group: share your experiences, how you’re feeling and ask questions from others in similar situations. Some options for this are through the OCD Action forum (Forums Archive - OCD Action) and OCD-UK forum (Family, Friends and Carers (FFC) - OCD-UK Forums (ocdforums.org).

Peer support

Peer support is when people use their own experiences to help each other and will aim to provide a space where you feel accepted and understood, treating everyone’s experiences as being equally important and brings people together to support each other.

You may be able to find peer support from:

• Mental Health Support Network provided by Chasing the Stigma | Hub of hope

• Helplines | Mind - Mind

• Home - Side by Side (mind.org.uk)

• Togetherall

• TOP UK Groups | TOP UK

More resources can be found here: About peer support - Mind.

Carers

You may not see yourself as a carer, as you might not be supporting them with physical activities. However, emotional support, encouragement and being there for them are part of caring for somebody. To read more about this see the Mind website.

Organisations such as OCD Action recognise that caring for somebody with OCD is often very demanding and have information online to signpost sources of support for carers here. Being a carer means you have a legal right to seek a carer's assessment from your local authority who will provide you with sources of support (ie. training, psychoeducation, support for your own wellbeing). Furthermore, OCD UK run free weekly support sessions which are accessible to people who care for somebody with OCD. You can find out more here.  

OCD will look different for everyone, and it can be hard to know what your loved one is going through and how much it is affecting them. There may lots of things that your loved one is doing that won't be visible, such as mental compulsion.

These are, however, some behaviours you can look out for, that might indicate that your loved one is experiencing. This list is meant as guidance, it is not an exhaustive list and displaying these behaviours does not mean that someone has OCD.

• Seeking reassurance from you that they have done things correctly (such as turning off appliances), that things didn't happen (such as running someone over when driving) or that things are unlikely to happen (such as their child being unwell whilst they are at school).
• Avoidance of going to places, doing activities or seeing certain people.
• Significant change in eating or hygiene habits.
• Spending more time on routines (such as cleaning or cooking).
• Increased concern for minor detail (such as where you may have been recently).
• Simple tasks taking longer than usual and might be done repeatedly.
• Saying that they need to do things repeatedly until they feel 'just right' or that they will feel uncomfortable otherwise.
• Emotional reactions to seemingly minor things.

We recommend that you read about OCD to have more of an understanding and awareness of what the condition is and how it is treated, as this may help you to know what is coming next and how you can best support your loved one. One book that we recommend to friends and family members is The Family Guide to Getting Over OCD: Reclaim Your Life and Help Your Loved One by Jonathan S. Abramowitz.

We also have a video on how friends and family can impact OCD.

The following is a list written by our Lived experience advisory panel, on things that they would find helpful if their friend or family did for them. This list is meant as guidance and is not exhaustive. Everyone's experience will be different: we always recommend asking your loved one what you could do to help.

• Acknowledging the OCD and that it is causing distress, validating the distress as very real

• Asking if the person is receiving help for OCD, and if not, is this something they’d like 

• Encouraging the person to call the OCD UK helpline on 01332 588112 and visiting their website at www.ocduk.org

• Signposting/referring the person to a service where they can access ERP for OCD

• Encourage the person to do things that support their wellbeing (e.g. walking, getting out in nature, visiting family/friends)

• It is important to respond as early as possible and to avoid a delay. You may be concerned that someone has OCD when they don’t think themselves that they have OCD. In this case it is important to mention your concerns even if you’re not sure and to support the person to seek help. 

• If someone has OCD (or you think they have) it is important to take this seriously, to document this and to support the person to seek support

• If someone has OCD during the perinatal period (or has had OCD in the past) you should liaise with your local IAPT service for advice and support

• Encourage the person to use the GP ice-breaker (www.ocduk.org/gp-ice-breaker/) if they are concerned about talking about their OCD to others

• Bear in mind that people can be very worried about talking about their OCD, perhaps being worried about the consequences of disclosing their intrusive thoughts.

• It can be particularly helpful to normalise intrusive thoughts – letting people know that everyone has intrusive thoughts, that these are just thoughts. People with OCD worry that intrusive thoughts are important and might come true so it is helpful as a first step to let people know that they are just thoughts.

• You can also be there for them in other ways, like going for a walk or watching a film together. 

The following is a list written by our Lived experience advisory panel, on things that they would find helpful if their friend or family would avoid doing. This list is meant as guidance and is not exhaustive. Everyone's experience will be different: we always recommend asking your loved one what you could try to not do, to help.

• Avoid looking for meaning in someone’s obsessions – remember that everyone has intrusive thoughts. Respond by saying that intrusive thoughts are unimportant thoughts that we all have. 

• Remember that obsessions about harming others are common and that responding to these with safeguarding/risk assessments can make the OCD much worse because it sends the message that obsessions are important. If in doubt please see [research paper will be circulated] and refer to an OCD specialist.

• Bear in mind that medication is not usually the recommended first line treatment for OCD, where it is recommended it should be offered alongside ERP (see NICE guidelines for more details) https://ocdaction.org.uk/resources/nice-guide-to-ocd-for-the-public/

• Remember OCD is highly distressing, it is not about enjoying cleaning, enjoying being tidy or enjoying making lists. 

• It is important to remember that people with OCD can seem to be coping well (e.g. going to work) but still feeling very distressed.

• Giving people with OCD statistical information about actual risks in relation to their intrusive thoughts is often not helpful and can lead to constantly seeking reassurance.

• OCD is very distressing and it is important to validate this distress and not to dismiss the experience as trivial

• Telling people to stop the compulsions is not helpful – if it was that easy people would have stopped their compulsions by now

• Avoid giving people a number of times to do something or a length of time to spend doing something, as they may obsess about this number. 

• See https://youtu.be/RDQPfR84cYE for more on what not to say to someone who has OCD

   

Starting these conversations can be difficult. You might be worried that you'll say something wrong or make things worse. You might feel upset to hear that someone you care about is struggling. However, starting the conversation is an important first step: the person might be afraid or embarrassed to let others know that they are not coping. e say or do can make a big difference to someone.

Our lived experience group have expressed that listening without judgement can be one of the most important things you can do to help. Other things include that is an ongoing journey and that you should try to validate the experience. Therefore, you might want start with asking the person some questions about how they are feeling. If it feels appropriate, you can bring up OCD and explain why you think it might apply to them. For resources on where to get support for OCD, see here.