Living with Sight Loss
Eye Conditions & Care | Living with Sight Loss
This information covers the emotional issues and the practical aspects of living with sight loss.
Mental Health Issues
Although there can be differences between the reactions of people experiencing sight loss suddenly rather than over a gradual period of time; many people experience a similar pattern of emotions. These are sometimes viewed in a similar way to stages of bereavement; however, individuals may differ in the intensity of what they feel, and may experience a variety of emotions at the same time. These emotions include shock, denial, distress, depression and resolution (adaptation).
Shock and Denial
Initial reaction to loss of sight is often one of shock and denial. This can begin after an eye specialist gives a diagnosis, or after trauma, if loss of sight is sudden. Denial and disbelief can show themselves in different ways. For example, second or multiple opinions may be sought: individuals may seek therapists and faith healers in the false hope of a complete cure. Some people will try to carry out sighted activities without making adjustments for loss of vision. Some people state they had no realisation that they were technically blind, even when the evidence is to the contrary.
Distress
Once the realisation of blindness is apparent, denial may give way to distress. In gradual onset sight problems, someone may become distressed if their eyes feel strained and they are getting headaches. They may feel anxious about diminishing vision as afternoon light fades. There may be concern about taking part in certain activities including reading and computer work in case it places additional stress on their eyes and hastens impairment. When sudden loss of sight occurs, distress may be experienced as anger or grief. In addition, there may be concerns about becoming dependent on others.
Depression
These feelings can be so overwhelming that a period of prolonged grieving and/or depression may arise. For some people, this can go on for a very long time, and they may need help from a counsellor, alternative therapist or medication, such as antidepressants, in order to deal with the feelings surrounding the depression.
Resolution (Adaptation)
In time, most people come to terms with their loss of sight. Emotions start to feel more manageable. As acceptance of sight problems occurs, an individual may feel able to start to learn new adaptation skills and regain control over their life.
"I have bad days, like when I cannot see the joy on my children's faces. I'm worried I'm going to lose the image of their individual features in my memory".
"I dislike not being able to do my make up. I used to spend ages on my appearance getting it just right".
"I feel so isolated. I don't have access to information sources like I used to. If I forget the words of a favourite poem I can't just go and look them up".
"Sighted people often stereotype others on how they look, I'm lucky I don't have those distractions and can perceive people as they truly are".
The Emotional and Psychological Effects of Developing Sight Problems
Dealing with Feelings of Isolation
These feelings can be very powerful. They can be triggered by many different reasons. Restricted access to sources of information, and sometimes being reliant on others to gain knowledge, can cause some people to feel isolated and vulnerable. It can be very difficult for many people with sight problems to travel and get around.
Developing sight problems can also affect relationships. Family and friends may find it harder to relate to the person with restricted vision. They might be worried about saying or doing the wrong thing. They may even try to avoid the person with sight problems altogether in order not to feel awkward. The person themselves may feel cut off from others as a result. They may feel others don't understand them. It may be harder to participate in joint activities. Also, as they adjust to loss of vision and adapt to different ways of doing things, their perception of how they see themselves might be affected. Some people experience a sense of isolation from themselves. They are not sure who they are anymore. They may experience reactions and feelings they had never felt before and as a result feel they are having an identity crisis. This may be especially so if the only knowledge they have about visually impaired people comes from community myths and stereotyped views on what it is like to experience sight loss.
It can be difficult if you have sight problems and are living by yourself. It can feel as though you are cut off from the world around you. You might have to make a greater effort to stay in touch with people, and whatever is happening outside. Foresight has details of local organisations who can help you keep in touch.
Some people feel their identity and roles within society have been eroded. They may have had to leave or change jobs. They may experience anxiety surrounding feelings of dependency, especially if they are wage earners, parents or had often been portrayed as the 'strong one in the family'. This in turn may cause them to withdraw from people around them, and conceal any expressions of need or outward shows of vulnerability.
"I felt as if I was failing my wife. I was no longer the primary breadwinner. I felt inadequate. It was easier not to do things together. I even used to wait for her to fall asleep before going to bed. I didn't feel whole, even though my wife kept telling me I was the same man she fell in love with. I wasn't sure who I was any more."
Talking to family and friends about how you feel can help. Some people prefer to talk to a counsellor - we believe that there are no counsellors in the U.A.E. at present, trained in helping people who are visually impaired. Foresight is looking into ways of providing this, so if you are interested we would like to hear from you. It can also be helpful to hear how other people with sight problems have coped with feelings of isolation. Foresight holds regular interest groups (in English and Arabic) - please contact us for details.
Coping with Feelings of Depression
Feelings of loss and sadness are very common, especially as someone comes to terms with losing their sight. For older people, the combination of ageing and sight loss can cause depression in a way that is difficult to combat, particularly if it is combined with some hearing loss, which is not uncommon. Talking about feelings to a relative, friend or counsellor can help. For some people, these feelings can become overwhelming and they might become depressed. Symptoms of depression include a persistent low mood, negative thoughts, feeling empty and in despair, problems with eating and sleeping, low self-esteem, irritability, not being able to enjoy favourite activities, loss of libido, low energy, inability or non desire to communicate, thoughts of self-harm or suicide.
Treatments for depression include medication such as antidepressants which are prescribed by GPs, and Cognitive Behavioural Therapy (CBT). CBT is a type of therapy which helps people develop a more positive outlook and develop coping strategies.
Dealing with Feelings of Anxiety
When people are told they will probably lose their sight, or develop sight problems through trauma; they often experience feelings of anxiety concerning the future. They can become very concerned and possibly avoid carrying out activities that require close eye work such as reading or computer work in case these activities should hasten or cause their vision to deteriorate further. This can be especially so if someone has lost the sight in one eye or has a medical condition where it is not known how severely sight will be affected. Talking to your GP or eye consultant can provide reassurance, as well as contacting organisations such as Foresight and other organisations (see Useful Organisations).
Adapting to situations and activities involving going out can be a source of anxiety for people with sight problems. Symptoms of anxiety can include nervousness, sweating, lightheadiness, rapid heartbeat and breathing rate. The person may feel out of control and worry that they may be going mad. These feelings of anxiety and fear are a natural physiological reaction to the body preparing for attack. It is known as the flight or fight response. However, this response can be disabling if there is no obvious enemy or life-threatening event to deal with. Some people can start to become fearful of feeling the symptoms of anxiety and might actually start to feel worried about becoming anxious; thereby, a vicious circle of self-induced anxiety may arise, which may include the development of phobias and obsessions. Gaining control over these symptoms can greatly reduce their severity and occurrence. This can be achieved through the use of relaxation techniques, yoga exercises and cognitive behavioural therapies. Medication such as tranquillisers may be used, but these can be addictive and do not actually deal with the causes of anxiety. For more information and support contact your medical practitioner. Foresight also has some more information about these issues - please contact us if you would like to receive it.
Coping with Feelings of Uncertainty
Developing sight problems can affect your confidence. You may feel unsure about coping with everyday tasks including travelling. Learning new ways of doing things can take time. It may be difficult to have to place more trust in others as your sight deteriorates. Many people with problems feel uncomfortable about being less self-reliant and not feeling in control. It can feel humiliating to have your privacy invaded; for example, having your mail read out to you. You may even be unsure about whether there is anyone else in the room with you.
"I felt really insecure. I had to learn how to cook and look after myself as a blind person. To become dependent on others for my survival was scary, especially as I used to think of myself as a strong, independent type".
You may be concerned about how others perceive you. This is especially true if you find relatives and friends starting to relate differently to you.
In addition, you may worry about your appearance. It may be difficult to distinguish colours or see whether you are appropriately groomed or not.
"I hated going out. I'm sure people were sniggering at me. My sister came round and told me I was losing out on life. She went through my clothes and sorted them out into matching colours. She stuck squares of similar feeling fabrics inside garments that would go together. So now I know I can confidently coordinate tops and bottoms".
Allowing yourself time to learn to adjust to sight problems is important. It might be helpful to talk with other people in a similar position about useful coping tips.
Using low vision aids and specialised gadgets can make the most of your residual sight and allow you to be more independent. For more information contact your Ophthalmologist or see Useful Organisations.
Your confidence will grow as you master new challenges and a sense of achievement starts to replace feelings of fear and frustration. Assertiveness training can enhance confidence when dealing with new situations and relating to others.
Foresight provides information for people with sight problems on how to apply make-up.
Coping with the Disabling Attitudes of Society
The only knowledge and experience many sighted people have of sight problems comes from myths and stereotypes in films and the media. The poor blind beggar, the embittered artist, the dependent invalid, the gifted musician, the talented psychic.
In society, becoming blind or partially-sighted may not only mean a loss of sight, but often a loss of adult status, an ability to speak for yourself and have a fulfilling life (including a job and a family).
Some sighted people may feel uncomfortable and avoid someone who has sight problems or talk to others about them, rather than with them. Other people try to take over and assume that if you have sight problems you must require assistance, rather than asking you first.
Some people may not realise someone has sight problems and assume that person is slow, clumsy or not very smart. It can feel very frustrating to be at the receiving end of someone's misplaced sympathy or lack of awareness.
It can be helpful to talk to others, especially other people with similar experiences who might have gained helpful tips in dealing with this issue. In addition, assertiveness training can help.
Hallucinations and Sight Problems
Many people experience visual hallucinations after losing their sight. This is a normal reaction and is not a sign of mental distress. These hallucinations can be anything from seeing a dog or a garden full of flowers to seeing people armed with daggers. Neuro-opthalmologists believe these hallucinations are caused by the brain trying to supply visual imagery normally provided by the eyes. Individuals vary in the length of time that they continue to experience these hallucinations, but these visions do eventually disappear. Charles Bonnet Syndrome is a condition which can affect people with sight problems. It is characterised by vivid, complex hallucinations and episodes can occur for periods ranging from days to years with hallucinations changing in both frequency and complexity during these time. Charles Bonnet Syndrome is more often seen in people with macular degeneration. For further information contact Foresight for a fact sheet.
See Useful Organisations or contact Foresight if you would like more information about any of the issues mentioned above.