Intensive care: Patients' experiences

Emotional aspects of recovery

Admission to an intensive care unit because of critical illness or an accident can have a huge impact on someone's life, both physically and emotionally. Many people said that, as well as recovering physically, they had to accept and deal with what had happened to them emotionally. Here people talk about recovering emotionally after being in intensive care.

Emergency admissions
People who have been in ICU can experience a range of emotions at various stages of recovery, including fear, frustration, a sense of achievement, anger and hope. Everyone is unique and can experience any range of emotions at different times.

Sleep
When some people first came home, particularly in the first month or so, they found it difficult to sleep and this affected them physically in terms of tiredness and emotionally in terms of their moods. A few had sleeping tablets for a while to help them sleep. Others recalled how their injuries had prevented them from sleeping because they could only lie in a particular way. One man, though, said he now slept better than he'd ever done before.

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Some people said that, when they first came home, their sleep was disturbed by nightmares. A few found discussing nightmares with medical staff, either before they were discharged or at a follow-up appointment, reassuring because they learnt how common it was for people who'd been in intensive care to have nightmares.

Memory and concentration
Some people felt their short-term memory had been affected by their illness and treatments and one woman discussed how she was unable to remember certain words when she was having conversations. Others said their concentration was poor and they found themselves unable to watch television or read for any length of time before their minds drifted off to other things.

Fears
When they first came home some people said that they felt uneasy about no longer being in the safe environment of hospital because they were unable to receive immediate attention if anything went wrong. Others were anxious at different stages of recovery about getting ill again, feeling panicked at the slightest cough or cold. The thought of having to go back to hospital or ICU frightened several people. When people had been able to discuss their fears and concerns about their recovery with medical staff, they felt much better able to cope.

Feeling emotional
Many people felt frustrated when they first came home, often because of their weakness, slow recovery and dependence, and this made some 'weepy' or 'tearful'. Others felt emotional and tearful when they went outside for the first time in months. Yet others were emotional and sometimes depressed at different stages of recovery and didn't always know why.

One woman described her recovery as a 'roller coaster' of emotions and said she felt particularly emotional, angry and frustrated when she was tired. She also felt 'euphoric' about being out of hospital and 'down' because she couldn't do all that she wanted to.

Many others said they felt emotional at various points in their recovery, including when they thought about what might have happened. Some wondered 'why me?' and many wondered 'what if?' The thought that they'd 'nearly died', that they'd been 'so close to death', had a huge impact on most people and everyone dealt with this in different ways (see 'Making sense of what happened' and 'Attitudes to life during and after recovery'). Some also felt emotional when they realised just how much love and support they had around them.

Paranoia, panic and flashbacks
Some people felt paranoid when first taken outdoors, one woman thinking that everyone was looking at her because she was in a wheelchair. A few others had panic attacks when they were still recovering and disliked being in crowds. One man said that, at first, he didn't want to speak to people on the phone or to socialise. This woman recalled having a flashback when she saw a nurse in uniform outside her children's school.

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Acceptance
Many people were glad to be back home from hospital and in their own environments. Some said that, although they were very weak and dependent on relatives, they were pleased to have overcome their illness and quickly accepted what had happened. Some felt frustrated with the slowness of physical recovery but accepted that they'd been extremely ill. Others said it took them some time before they could accept their experience but they now felt 'lucky' compared to those who hadn't survived intensive care.

Anxiety, depression and post-traumatic stress disorder
It is common for people who have experienced an event like sudden critical illness to feel shocked and, later, anxious or depressed. Losing control over one's life and being weak, dependent and immobile for quite some time can affect many people who have previously been relatively healthy and active. Some people who have been in intensive care experience Post-Traumatic Stress Disorder (PTSD). This is when they repeatedly re-live the experience in the form of flashbacks, memories, nightmares or frightening thoughts, especially when they are exposed to situations that remind them of the event. Anniversaries of the event can also trigger symptoms. People with PTSD also experience emotional numbness and sleep disturbances, depression, anxiety, irritability or outbursts of anger, and intense guilt. Most people with PTSD try to avoid any reminders or thoughts of the event. PTSD is diagnosed when symptoms last more than one month. Although PTSD might not be diagnosed and labelled, many people we spoke to had experienced some of its symptoms. How much professional help and support people receive is sometimes a personal choice and, sometimes, dependent on resources.

National Institute for Health Care ExcNICE recommends that:
“If you needed structured support while you were in hospital, you should have a meeting with a member of your healthcare team who is familiar with your critical care problems and recovery. The meeting will be to discuss any physical, sensory or communication problems, emotional or psychological problems and any social care or equipment needs that you might have.
 
If you are recovering more slowly than anticipated, or if you have developed any new physical or psychological problems, then you should be offered referral to the relevant rehabilitation or other specialist service.
If your recovery is not progressing as quickly as you had hoped, your healthcare team is there to help you. Everyone’s experience is different and some people may need more time and help than others to recover.

If you have symptoms of anxiety, depression or post-traumatic stress, then you should be treated according to the recommendations outlined in the relevant NICE guidance. NICE has produced ‘Understanding NICE guidance’ about anxiety, depression and post-traumatic stress.” (NICE 2009 CG83).

Some people said they felt anxious or depressed when recovery was taking longer than they expected or when it was hampered by colds and infections. A few said that their illness brought up ongoing personal problems, and this led them into depression. One man was prescribed anti-depressants. He didn't want them, though, and said his feelings of depression had more to do with being out of work than his illness. Another was on anti-depressants for his depression but said he would have valued some in-depth counselling or attending a support group for people who'd been in intensive care, had there been one.

One woman said she became depressed when she worried about being able to cope in her job again (see 'Impact on work'). Several said they bottled up their emotions because they didn't want to worry or upset relatives. One of these women said she found it difficult to discuss what had happened with her family and felt extremely guilty for what she'd put them through.

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Other people said they felt anxious, 'down' or depressed at different points. Some were reassured when they discussed their feelings and concerns with medical staff, including psychologists. One man who was depressed said he found discussing his feelings with a psychologist frustrating and preferred talking to family. Another said he turned down an offer of counselling because he preferred the spiritual counselling he received through his church.

Some people said they would have liked to talk to someone outside the family about their experiences of intensive care but hadn't been offered counselling. One woman who received counselling said she would have valued sessions with someone who knew much more about the impact of intensive care on people.

Some people said that, while they generally got on with life, they found the anniversary of their illness a difficult time, one woman saying it was 'like a bereavement'. For another woman, the anniversary of her illness coincided with the death of her unborn baby, so was a particularly challenging time (see 'Death and bereavement').

Improvement and recovery
Many people improved emotionally as they improved physically and could see an end to their recovery time. They also felt confident again because they were more independent. One of these people said she now focussed on the present and looked forward rather than at the past. For one man, who'd had a road traffic accident, his emotional recovery also included driving again.

With hindsight, often after they'd recovered enough to do most daily activities, some people discussed the positive outcomes of their illness, such as changes they'd made to their quality of life (see 'Attitudes to life during and after recovery').

Planned admissions
For those who are admitted to ICU because of planned surgery, their ICU and general ward stay is usually shorter and they are not as weak or immobile as those admitted as emergencies. Even so, awaiting and having major surgery can be frightening and the interruption to normal, daily life worrying. Coming back home from hospital involves a period of recuperation that can affect people in many different ways, including all the emotions experienced by those who were admitted to ICU as emergencies. One man, who'd had surgery for cancer, said that a few days after coming home he felt depressed but was unsure why. Like several others, though, he soon accepted that he needed time to rebuild his strength, and felt he had plenty of support from family and medical staff.

For some people who'd had planned surgery, the intensive care and overall hospital experience was often, with hindsight, a positive one. This was particularly the case with those who'd had heart surgery because, although they were weak when they first came home from hospital, they were soon able to do more than before their operation (see 'Physical recovery').

Last reviewed May 2015.

Last updated May 2015.

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