Information for Carers and Family Members
It can be difficult and distressing to see someone you care about or love experiencing the complex symptoms of Depersonalisation and Derealisation disorder. But as family and friends you can really help comfort someone with DPDR by acknowledging their symptoms and offering a safe and settled environment.
We spoke to some people with DPDR and their carers to come up with a few ways in which you can offer support to someone with DPDR:
1. SHOW ACCEPTANCE
Show acceptance of the situation rather than trying to understand the complexities of the condition. As carers you will gain insight and knowledge about the condition but without lived experience it is difficult to conceptualise. It is almost impossible to understand DPDR without experiencing it and this is OK. Try not to put additional pressure or expectation on yourself to understand.
2. LISTEN
DPDR can be extremely difficult for a sufferer to explain and may cause them additional distress in trying to do so. Try to listen and engage with acceptance and reassurance rather than with questioning and doubt. Acknowledge that it is real for the person experiencing it and offer love, support and kindness.
3. BE PATIENT AND CALM
People can experience DPDR episodically or on a continual basis. Remaining calm, listening and offering reassurance is crucial. Panic, stress and anxiety can exacerbate symptoms for a sufferer, so it is important that as a carer you remain both patient and calm with a supportive and comforting manner. Remind your loved one that they are with you and are in a safe place.
4. TRY NOT TO MAKE ASSUMPTIONS
Often people suffering with DPDR are ‘fully’ functional and physically appear ok, but it is best to try and avoid saying ‘you look ok’ or ‘I can’t see anything wrong with you.’ DPDR is an invisible illness which makes it all the more terrifying for a sufferer. Instead acknowledge that their experiences are real and offer comfort and reassurance. Perhaps gently ask them what they may like you to do to help them. Simple gestures such as holding a hand, a gentle hug, even regular smiles and eye contact can help someone feel more connected in their body, to their surroundings and other people. Loving care can help remove some of the fear for a person living with a lonely and isolating condition.
5. TRY NOT TO TAKE THINGS PERSONALLY
Some people with DPDR can experience emotional blunting and struggle to access emotions which they have previously experienced. Try to remember that just because they might not outwardly appear enthusiastic or upset about something, that doesn’t mean that they are uncaring or ungrateful.
6. DO SOME RESEARCH
Invest some time to do your own research to learn about the condition. Awareness of DPDR is slowly growing and whilst there have been limited resources available you can still seek and find useful information. It is worth noting that some of the forums can be negatively biased and triggering so we recommend visiting these with caution.
Here’s a short film created by Unreal board member Joe Perkins, in which he illustrates his experience of DPDR.
“I came across the DPAFU self-help book which became a significant support tool for both me and my therapist. I was so touched when a friend purchased a copy so he too could understand and learn about the condition to support me. Such small gestures can be hugely significant when you are going through something so terrifying.”
— Stephen
7. CREATE A SAFE, SUPPORTIVE ENVIRONMENT
Think about ways that you could help them to feel safe, secure and settled. Physical touch and comfort can be helpful, together with reassuring words and the knowledge that they are not going to be left alone and are in a safe place. Perhaps consider other tools which may help them feel more settled, such as a comforting blanket, aromatherapy oils, music, a warm bath or hot drink.
8. BUILD A NETWORK
There may be times when you can't offer them the support they need. And this is ok. Try to think about who the best person is to contact at these times and how you can widen their network of support.
9. FIND SUPPORT
Research local therapists who can offer professional support. There is a NHS Centre for Anxiety Disorders and Trauma (CADAT) which is an outpatient psychological therapy service. CADAT provides assessment and cognitive behaviour therapy (CBT) locally and nationally for specific anxiety disorders and depersonalisation disorder as well as The Depersonalisation Clinic with Dr Elaine Hunter which provides expert help to maximise recovery. Be available to offer support, listen and comfort before and after therapy sessions, helping them to travel to appointments and offering encouragement and reassurance that they are not alone.
10. WORK TOGETHER
Talk together about their symptoms and learn together how to manage them.
“It was really important for us to work together to learn and understand ways to try to lessen and manage the symptoms. I learnt that DPDR doesn’t mean someone’s judgement is impaired and whilst they are very ill, they can still be a fundamental part of all decisions regarding what’s best for them.” Isabella, long-term carer of someone with DPDR.
11. CONSIDER A CRISIS PLAN
Sometimes the experience of DPDR can be so overwhelming that suicidal feelings can occur. Consider helping them make a crisis plan [FUTURE – LINK TO CRISIS PLAN – GWEN TO CREATE RESOURCE AND GET APPROVAL FROM PROF D/ELAINE] to include people to contact, as well as out-of-hours support from a local GP or the Samaritans.
12. LOOK AFTER YOURSELF
When you are caring for someone else, it is important that you look after yourself and your own well-being. Try to get enough sleep, eat well and take time out when you can. Talking to other people with similar experiences can also be helpful.
Take a look at our Peer Support page to learn how you can connect with other supporters and carers.