Emotional impact of stroke

Strokes usually come out of the blue and can bring dramatic and unexpected changes to people's lives. Most of the people we spoke to were initially shocked and worried about the changes in their body and how they would cope with the things they were so used to doing.

Several people said that they felt overwhelmed and hopeless and had broken down in the hospital. Sometimes, however, this initial hopelessness turned into a determination to get better.

He broke down in the hospital when he had to be hoisted onto the toilet but although he initially felt desperate this turned into a determination to get better.

Others felt that the stroke had very little emotional impact on them or that they were optimistic that they could beat it right from the start. 

She was initially a little angry at having a stroke but quickly became determined to get better.

Why me? 

“Why me?” was one of the commonest questions that people asked. Some people felt angry that the stroke had happened to them and found it difficult to come to terms with the new person they felt they had become. Others reflected it was just one of those things and older people sometimes felt it was just a consequence of their age. A man who had a strong faith reflected that it was just a natural thing that perhaps was meant to happen to him.

Although she was initially frustrated at the loss of independence she has accepted her stroke as just part of getting older.

His religious faith has helped him come to terms with his stroke.

Others, who had previously had a strong faith, felt it had been shattered although some said that their faith returned with time. 

How do I cope with the changes?

Coping with the impact of disability on every day life could make people frustrated and cause them to be short tempered or emotional. People often took their anger out on those closest to them although they did not always realise that they were doing this until later. 

He feels his wife has been there for him 100% but he has taken out a lot of his frustration at not being able to do things out on her. He has been given medication which has helped.

He was frustrated because he could not speak and sometimes was impatient with his young daughter.

Although the frustration often did not go away many people felt that as time passed they coped better and were less likely to get upset. 

She has problems with her speech and with daily activities which limit her life and can make her sad but she no longer gets very emotional.

Loss of identity

Some people found that their stroke had a huge impact on their life and felt that they were no longer the same person. One man felt that he was no longer 'a fighter', another that he had a different outlook on life and that whereas he had been outgoing previously he now preferred to sit quietly. Another commented that life would never be the same again. 

Many struggled with the idea that they had become a disabled.  This was exacerbated by other people's reactions to disability, such as not looking at people in wheelchairs, and by how difficult it could be to go places if you have limited mobility and if buildings or transport was not accessible. Some people said that part of a process of acceptance was accepting the “new you”, learning new ways to manage the disabilities and finding new activities to replace those that were no longer possible. 

The transition from hospital to home was sometimes particularly difficult as some felt that they had settled into a new world in the hospital and no longer belonged in the outside world.

She felt out of place being in a wheelchair in a world where she had previously worn high heels and didn't like leaving the hospital.

Fear and anxiety

Fear of having another stroke was a constant worry for some making them feel vulnerable about being left alone. One man who had been on his own when he had the stroke did not like being alone now and always made sure his wife had her mobile phone.

He is frightened of having another stroke and does not like to be left alone. He also finds emotional situations like funerals difficult.

Others tried to stay positive and take steps to change their lifestyle and take medication to prevent another stroke. (See 'Talking about - Preventing another stroke: Changes in life style')

Some were fearful about the limitations of their body, particularly fear of falling, or felt vulnerable when they were out and about because they now had to use a stick or wheelchair. People whose ability to speak had been affected sometimes felt anxious about speaking in public. 

Loss of confidence

Fear and anxiety could often lead people to feel less confident about doing things they would have previously done without thinking. This could even affect things that were not necessarily limited by the stroke. Confidence could be regained but it had to be built up over time by practicing the problematic task. Some people found it helpful to talk with a health professional and learn techniques to deal with anxiety.

She feels that having a stroke can take away your confidence and that you have to build it back up again.

After his stroke he felt anxious about things like filling out forms and planning. He saw a psychologist who identified his anxiety and has helped him with relaxation.

Emotional lability

Many people, and particularly men, had noticed that they more easily became emotional and cried. Although this sometimes happened in emotional situations such as funerals or on hearing bad news it could also happen in unlikely situations, for example watching sport on television, hearing the national anthem or listening to a Christmas carol. Some found it improved over time but others found that it remained and would occasionally happen when they were least expecting it.

He was surprised when he cried during a Christmas carol even though there was nothing to cry about. He had not been told it was normal to be more emotional after a stroke.

Emotional lability is a very common problem after stroke. Some people had been told this by a health professional and found this simple knowledge reassuring. Others were unaware that it was normal and had felt embarrassed about talking about it.

After his stroke he became much more emotional and angry but he had been reassured that this was a normal part of stroke.

His doctor had reassured that becoming more emotional was part of having a stroke.

Depression

It was common for people to feel down after their stroke and many people we spoke to said they would occasionally feel down or depressed when they realised they could no longer do something. Some, however, had found themselves down and lacking in motivation most of the time and were eventually diagnosed with depression. One woman described it as being “locked in a box”. People who have depression after a stroke were sometimes prescribed an antidepressant which could help. A few had some counselling although this was not always readily available and there were long waiting lists. 

Things that help and positive outcomes

Whilst most people felt that stroke had a mainly negative impact on their lives some said that they had changed in positive ways too. This included becoming a better person with more humility, looking out more for people with disabilities or older people and having more enthusiasm for life. Other things that helped people with the emotional side of stroke included a determination to get better, or not to let the stroke beat them, and having supportive family and friends.