Complicated grief (prolonged grief disorder): symptoms, causes and getting help

Grief is a natural response to loss, and the NHS stresses there is no right or wrong way to feel. Most people find it becomes less intense over time. Complicated grief, also called prolonged grief disorder, is the name given when that does not happen: grief after a death lasts many months or years and keeps its force.

Cruse Bereavement Support says that over time most people start to adapt and feel better after someone dies. When someone becomes stuck, or is still unable to cope after many months, it is sometimes known as complicated grief or prolonged grief disorder. Cruse is open that understanding is still growing, that the two terms are often used interchangeably, and that not everyone agrees grief can be a mental health issue.

Cruse describes prolonged grief disorder as intense, long-lasting symptoms of grief, together with ongoing problems and difficulties in coping with life, going on for more than six months after someone dies.

Normal grief can include shock and numbness, overwhelming sadness, tiredness, anger and guilt, according to the NHS, and these feelings may not be there all the time. The NHS lists the symptoms of prolonged grief disorder as the following.

• Very difficult feelings, such as sadness or guilt, that do not get any easier as the months go by.

• Spending a lot of time thinking about the person who has died.

• Difficulty accepting the death.

• Not being able to return to everyday activities.

• Suicidal thoughts.

Cruse says complicated grief can be difficult to identify, because a wide range of feelings and physical effects are normal in grief and it is often hard for a very long time. Usually, though, feelings change over time, slowly becoming more manageable or coming and going. Cruse describes warning signs.

• Feeling stuck: still flattened by sadness, or completely numb, after many months.

• Not coping with life: struggling to feed yourself, shop for groceries or return to work after several months.

• No enjoyment in life: withdrawing from daily life, avoiding things you would normally like, and finding no enjoyment in anything for a long period.

• Very difficult feelings: guilt or remorse, yearning for the person and wishing for the time back, thoughts that feel stuck on a loop, a sense there is no meaning or hope, and difficulty resting and sleeping.

Cruse says people often ask when the pain will stop, but the truth is that there are no set stages or time limits to grief. The NHS notes that people often talk about stages of grief (denial, anger, depression, bargaining and acceptance), but that you may not experience all of them, they may not happen in order, and you may not move smoothly between them. It says powerful feelings may appear unexpectedly but will eventually become less intense over time.

The six-month point that Cruse mentions is a guide, not a cut-off: the key question is whether the grief is staying equally intense and is stopping you functioning. The NHS also suggests seeing a GP if you have had a low mood for more than 2 weeks, if things you are trying yourself are not helping, or if you would prefer a referral.

The NHS says you are more likely to have prolonged grief disorder if the death was traumatic, or sudden and unexpected. Cruse, which says there is still a lot to learn, lists these risk factors.

Cruse explains that clinical depression is a condition where feelings of being sad, low and hopeless last over weeks or months, often together with anxiety. It is common to feel like this after someone dies, and depression and bereavement can happen at the same time.

In practice, the two overlap and you do not need to work out which one you have before asking for help. The NHS says to see a GP if you are struggling to cope with stress, anxiety or low mood, or have had a low mood for more than 2 weeks. A GP can look at both grief and depression and discuss the right support.

The sources read for this guide do not name a specific UK treatment pathway for prolonged grief disorder. Cruse says that if you can access therapy, either via the NHS or privately, this can help, and that you should speak to your GP if you are concerned about ongoing mental health issues. The NHS says that if you are 18 or over (or 16 or over in some areas) you can refer yourself directly to an NHS talking therapies service without seeing a GP.

Cruse lists what some people with complicated or prolonged grief have found helpful: keeping a steady routine and resting and eating at regular times; self-compassion, including allowing small moments of happiness; and talking to friends, family or your community, including a support group of others who understand.

The NHS suggests talking about your feelings to a friend, family member, healthcare professional or counsellor, considering peer support, exercising regularly, and eating a healthy diet with regular meals. It advises not trying to do everything at once, setting small targets, not telling yourself you are alone, and trying not to use alcohol, cigarettes, gambling or drugs to relieve grief, as these can contribute to poor mental health.

Cruse says complicated grief is not just felt by adults: children and young people experience it too, and it has a dedicated page on this. The NHS says that if you are under 18 you can find mental health support for children and young people on its website, and for bereavement after the death of a baby or young child it points to The Lullaby Trust and SUDC UK.

If you are worried about a child who seems stuck in grief, withdrawn, or is not able to return to normal activities after several months, speak to their GP or school. Both can help find specialist support.

Suicidal thoughts are among the symptoms the NHS lists for prolonged grief disorder, and Cruse says suicidal thoughts during grief are more common than people realise. If you or someone you know is in immediate danger, call 999. For a mental health crisis that is not immediately life-threatening, the NHS directs you to its page on where to get urgent help for mental health, and NHS 111 can help you decide what to do.

You do not need to wait until things feel unbearable. If you are struggling, tell someone you trust and speak to your GP. Charities such as Samaritans and Cruse offer confidential support.

On the NHS, your GP can talk through your options and refer you for talking therapy or specialist mental health care if needed, and in England you can self-refer to NHS talking therapies. Charities such as Cruse offer bereavement support, and Cruse says its helpline is available for support.

Private counsellors and psychologists also offer grief support. If you choose this route, check that the therapist is registered with a professional body and has experience of bereavement, and let your GP know so that any low mood or sleep problems are monitored.