Illness can cut people off from each other

There are many ways illness can cut people off from each other.  Practicalities of course play a part, but sometimes these could be overcome if the will was there.  Illness can sap the will.

Illness can come between people who have known and loved each other for a long time.

Illness can affect verbal communication
  • Illness can take away the energy or the will to engage in ordinary conversation.
    • people can assume this is the case when it is not true.
    • this may be the case in some situations but not others,
    • somebody else may have to put effort into finding a situation or setting where it is not true, or is less troublesome.
  • Illness can take away the capacity to engage in ordinary conversation
  • Illness can make it harder to think or talk about difficult or emotional subjects
  • If someone finds it difficult to talk at certain times of day, or when their symptoms get in the way, other people may ‘interpret’ a general reluctance to talk about anything that matters.  They may then no longer make the time or effort to raise important topics, thereby cutting the ill person out of significant discussions.  The ill person’s power to influence events which affect them may be reduced in this way too.
Illness can affect non-verbal communication too
  • Illness can prevent sexual relations, or other kinds of physical contact
  • The physical contact between a carer and the person they care for may get in the way of a sexual, tender, loving relationship – though this is not always the case.
People may just want to keep away entirely
  • Some people are disgusted or revolted by the signs of physical illness, and may stay away because of this.
  • Some ill people are afraid others will feel disgusted or revolted by the sight of their bodies – and so keep other people away.
  • Illness changes relationships, moving power and control from one person to another.  The effect of this can be to strain relations.
Emotions can come between people
  • Illness has many ways of making people angry – and anger can cut people off from each other.
  • Other people can be jealous of the care given to someone who is ill, particularly within the family.  This can come between them.
  • A relationship which was based on the ill person giving a lot of attention to someone else may not survive when the ill person can no longer do this.
  • Illness can make people feel very guilty, as if they were responsible for it, even if they were not.  They may avoid the person in order not to feel self-blame, or blame from someone else.
  • Relatives are sometimes distressed when an ill person shows less interest in ordinary family matters.  The lack of interest may be temporary if the illness fluctuates, but it may be a sign of future losses.  If it is not possible to talk about the loss and to grieve together with the person concerned, it may become a forbidden topic which cuts off free communication.
  • The person who is cut off in any way may have no knowledge of why they have been excluded from decisions or from conversations.  It can be hard for family members to tell them – though, if achieved,  this can be a very rewarding discussion which brings people together.
  • Grief can come between people, unless it can be acknowleged and shared, in which case it may bring people closer.  Unfortunately, this cannot be guaranteed.
‘Don’t upset them’
  • Because illness brings losses, talking about anything that matters may confront both the ill person and others with an awareness of what has been lost – and this is upsetting.  Pretence makes people feel cut off, but some people prefer it to being confronted with their own or someone else’s emotions.
  • People can feel bad if they have made someone cry – even if they are wholesome tears of grief for a loss shared.  If you feel you have to avoid upsetting someone, you may find it safer not to talk to them at all, especially not about anything that matters.  This cuts off important levels of communication.
  • Some kinds of illness can make tears flow more freely – so people may try to keep the conversation superficial, or keep away entirely for fear of being confronted with sadness they feel they can do nothing about.
  • People often think that being upset means the person is getting worse, or will get worse, even if this is not true at all.
  • One of the things ill people can get very distressed about, is the idea that they are being ‘kept in cottonwool’ and are no longer allowed to share the normal day to day upsets and troubles, large and small, of their children or their family.
People can hesitate to tell their troubles to someone they feel ‘has enough of their own’
  • the ill person may truly be too tired or occupied with their own situation to be able to listen
  • the ill person may no longer be able to respond as they did – and this can be embarrassing and distressing.
  • the ill person may be capable of responding if only they were given the chance;  they may like the distraction and enjoy the capacity to play a real part in providing emotional support to people they care about.

People can make assumptions (which may or may not be true) about people who are ill being unable or unwilling to engage in thinking at all, or in thinking about difficult subjects.

Illness can also prevent ordinary communication with other people.

Practicalities:

Many symptoms tend to cut people off from those who do not have specialist knowledge or experience.  Those in close contact may learn how to communicate in spite of these symptoms, but other people may find it harder.   Deafness, blindness, difficulty thinking, or putting thoughts into words, or remembering, mobility problems, speech problems fatigue or exhaustion can all get in the way of ordinary, friendly communication with people who lack relevant experience.

Some conditions, such as depression, paranoia, mania and addiction, by their nature directly affect relations with others.  The ill person may get angry or threateningly miserable, or frighteningly cut off themselves, making people wary of getting too close, too often.

Forbidden topics

The life of a carer may  be very different from how friends imagine it.  Friends may envy the apparent freedom of ‘not working’, not realising how tightly controlled the carer is by the illness or the symptoms or the ill person.  But it may be hard to tell them just how bad things are, for fear that they feel too guilty, too horrified, too distressed or even too pitying.  The real situation of the carer may become a forbidden topic.

Talking about the illness raises issues of privacy and intrusiveness.  There may be a conflict between being too curious and not seeming interested; between letting people know what is going on and endlessly describing or reliving symptoms and treatments.  It can be very difficult to judge what to say, where to start and when to stop.  Illness can stop normal social signals working – poor eyesight, for example, may make it hard to know if the listener looks as if they are flagging; a weak voice may mean the person is too tired to talk, or it may be the only voice they have to talk with.

Talking about any possible negative outcome may be a forbidden topic.  Some people have a metaphorical notice over their head which says ‘Only positive thoughts allowed here’.   The need to pretend all is well (and always will) be cuts off any ‘bad’ or disturbing thoughts or anxieties.  This cuts people off from anyone who is not comfortable pretending, and it can also cut the person off from themselves.  The more disturbing thoughts are then left to surface at night or in bad dreams, where they cannot be thought about sensibly and they remain frightening partly because they are unshared, unrealistic and a cause of emotional isolation.

Some people are afraid that talking about death will hasten its coming.  Socially, it is not generally considered a ‘correct’ topic, especially with someone who is ill.   It may be possible to talk about treatments, but not about ‘what if…’  or ‘… eventually…’  or death itself.

Forbidden topics have a habit of expanding, making any topic dangerous because of where it might lead.

Attempts to hide an illness can lead to misunderstandings – and people can become cut off from friends as a result of a misunderstanding.

People who are ill sometimes complain about relatives ‘keeping them in cottonwool’ – not letting them in on troubling decisions or unpleasant revelations about family members, on the grounds that ‘they’ve got enough to worry about as it is’.

Religious or superstitious or philosophical beliefs.

Coming into close contact with a serious or chronic or life-threatening illness can change people’s opinions about what matters in life and cut them off from people they knew before.  Topics which previously caused no problem may now become very uncomfortable.

Loss of faith can be a problem for Christians, Jews or Muslims facing a serious, life-threatening illness.  Beliefs that only good people become ill, or that God looks after those who believe in him, or that there is some justice in the world can all cause problem when confronted with an illness which clearly defies such beliefs.  People can be very distressed about the feeling that their God has abandoned them, and their distress can be made worse if they feel they can no longer take part in the life of their religious community.

Superstitious beliefs, such as the belief that illness can be caused by others ‘ill-wishing’ them, or doing some kind of magic, can also cut people off from others – in particular, from those they hold responsible.

Opening up forbidden topics

Opening up forbidden topics can open up communication.  People may not have to be so cut off if those around can find the time and place and space in their minds to address normally forbidden topics.

As a counsellor, that is what I often find myself doing.  People clearly feel less cut off when they are given the opportunity to talk about topics which upset them, make them cry or make them frightened, with someone who is not themselves frightened of these topics nor of where they might lead.  It can be a great relief to share distressing thoughts about an illness and its consequences with someone who has not wanted to stop the conversation, or tried to encourage them to ‘move on’, or to ‘put it all behind them’.

Some people prefer to be cut off than to have these conversations and discover for themselves where they lead.

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About thetroublewithillness

I've been a counsellor for people with physical illnesses for a long time now, and learnt a lot about what it's like living with your own or someone else's illness. I want to pass some of this on.
This entry was posted in carers, counselling, emotions related to illness, health, illness, talking about feelings. Bookmark the permalink.

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