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Coming To Terms
Having a stroke is a major life event which often happens out of the blue and brings unexpected changes to people’s lives. After an initial recovery period the emotional impact of stroke becomes more real. Knowing that some of the difficulties in coming to terms with having a stroke are recognised and understood will hopefully encourage you to seek help if and when you need it.
'Coming to terms' is your emotional journey through stroke ending in acceptance.
'Why Me?'
‘Why me?’ is the most commonly asked question of all. Asking why is often the first step in coming to terms with having a stroke and the beginning of making adjustments after a stroke. Hopefully you will have found out the cause of your stroke but not everybody does. Accepting that your life cannot be exactly the way it was before and overcoming the feelings of loss and fear you may experience are a big part of your emotional recovery.
A Grieving Process
Stroke often happens suddenly, without warning, and can cause overwhelming feelings of shock and loss. It is not uncommon for people who have had a stroke to say they feel like part of them has died. Many people affected by stroke and their families experience similar emotions to a grief reaction such as shock, denial, anger, guilt, fear, and/or depression.
It is important to recognize that these feelings are normal responses to a major life event. In time most people move forward, adjusting to life after a stroke and accepting the changes in themselves.
Here are some of the commonest grief related emotions experienced after a stroke
- Shock—being shocked into inaction, feeling that what is happening is not real
- Denial—initially denial protects you from being overwhelmed by the changes in your life
- some people may become ‘stuck’ in denial and are unable to make progress in coming to realistic terms with the effects of their stroke
- denial can also frequently be a lack of insight into what has happened due to damage to thinking processes (or cognitive effects) because of a stroke. In this case it can seem as if the person is actively denying the problem and the family might blame them for this, when in fact the person cannot do anything about it.
See ‘Thinking And Behaviour Issues After Stroke’ SS9 [492K, PDF]
- Anger is a normal emotional response, as the full implications of what has happened to you are realised. You may feel angry with yourself, God, a loved one, or the doctors and nurses for not doing enough for you or for not preventing the stroke. Anger is often directed at those closest to you, which can easily be misunderstood.
- Guilt can be about what caused the stroke, the disruption and worry to the lives of those around you, not being able to work or not being able to contribute as before. Feelings of guilt can be powerful and destructive and completely irrational.
Loss
There are many examples of how a sense of loss may be felt during your recovery process. These losses may not be that obvious to other people but they are part of what makes up your personality and sense of self worth. These losses include
- physical ability
- decision making
- identity
- confidence
- dignity
- control
- sense of purpose
- income
- independence and roles in family, work and social life
Fear
Anxiety after a stroke is often related to feelings of fear. Fear of dying, fear of having another stroke, fear of the unknown, fear of loss, fear of failing. Life after a stroke is made up of ups and downs and fear can catch you out when you are not expecting it.
Accepting Change
Pattern Of Accepting Change
Any big change in life brings about emotional reactions. Psychologists have identified stages of how people feel going through change or transition. These stages can be plotted on a graph to show that it is normal to feel worse before being able to adapt and adjust (see graph).
‘Small Achievable Goals’
Recovery from stroke is usually a gradual one made up of small but significant achievements. The pattern of accepting change described can also be applied to the smaller goal setting challenges that make up recovery. Even though a new goal may seem frightening you can achieve it or adapt it to one you can achieve. In this way you can remain positive about your goals and reassure yourself that they are achievable.
Some people find their ‘unrealistic goals’ can be a major source of motivation even if further on they realize they were not achievable. Above all it is vital to remain as optimistic as possible. This is why recognising depression is so important. Remember that having good days and bad days is natural and there are limits to what you can achieve in any one day.
How You Feel About Yourself
Having a stroke can affect how you feel about yourself in many ways
- having an altered body image (feeling that you look different)
- having an altered sense of self (feeling different about yourself)
- having a sudden dependence on other people
- the transition from being able bodied to disabled
- feeling low in mood or depressed.
- having an altered sexual identity and sexual relationships. See Resuming Your Sex Life
and/or Sex After Stroke Illness SS6 [709K PDF] for more detailed information
- waiting to get back to ‘normal’, to take up your life where you left off
Blaming Stroke For Other Things Going Wrong
Coming to terms and adjusting to effects of your stroke will not mean an end to other problems in your life. This can be a harsh reality for some people. Pre-existing difficulties will still be there e.g. relationships, marital problems, financial, work and other unresolved issues. Remember life is unpredictable and uncertain—with or without a stroke.
Letting Go—Adjustment And Acceptance
Letting go happens when you can see yourself as you are now and not as you used to be accepting the loss of ‘old self’. To get there you will reach a period where you are able to start looking at your ‘new’ identity. You may start to reflect on what has happened, how things have changed, and to look at your recovery. Then you might find yourself imagining situations and visualising yourself in places as you are now and not as you used to be. This discovery of your new self image will include your new way of looking/feeling/ability to function. So this process leads to acceptance of your new identity and living with stroke.
Effect On Other People In Your Life
Most relationships are complex and we have very different relationships with different people. What we don’t always realise is how much our relationships with other people can be affected by the way we feel about ourselves. Try to remember that other people may
- lack understanding of how you are feeling
- benefit from sharing your thoughts and feelings
- have been affected by your stroke too
- be too scared to talk about their own fears and worries
Stay Focused
Fight feelings of isolation by asking family members to get involved in your rehabilitation and care. At the same time strive for as much independence as you can but use any opportunities that arise to boost your confidence e.g.
- obtain more information about your condition and progress
- become familiar with your abilities
- get involved in making decisions
- ask for help with your appearance
Talking Therapy
Being able to talk about how you feel is healthy but not always easy! Some people find they just cannot talk to family members about how they really feel about a situation. Some find they can open up to a stranger or someone involved in looking after them such as stroke nurse or therapist much more easily. Some people benefit from talking to someone with special training. This kind of help is called talking therapy and it includes counselling and cognitive behavioural therapy (CBT).
If you go for any talking therapy remember to let the person know if you have poor concentration or fatigue. If you have memory problems ask for a written summary of the sessions and any actions to be taken.
Counselling
Counselling generally allows people to explore various aspects of their life and feelings that are causing distress. Bottled up feelings such as anger, anxiety, grief and embarrassment can become very intense and counselling offers an opportunity to explore them, with the possibility of making them easier to understand. Counselling does not include giving direct advice.
Cognitive Behavioural Therapy
CBT focuses on how you think about yourself, the world and others and how your thoughts and actions affect your feelings. Working with a therapist can help you to change how you think (cognitive) and what you do (behaviour). These changes can help you to feel better. CBT focuses on 'here and now' problems and difficulties. Instead of focusing on the causes of your distress or symptoms in the past, it looks for ways to improve your state of mind now.
British Association for Counselling and Psychotherapy
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