Reactions to losing sight can vary enormously but in this section you will find a description of some of the most commonly experienced feelings.
When and how we begin to experience sight loss can make a difference, and so can our personality and usual ways of coping with difficulties, or how much support is available. However there are a range of feelings and responses that many people experience.
Who does this apply to?
Feelings of course vary from person to person, and may be different when someone has little or no sight from birth and grows up with this as their normal experience. However, even when a sight loss condition is present early in life, it may change over time and lead to similar experiences to those described.
Life changes can also have an impact on how we feel - for instance losing a job; a partner or carer dying or moving away; moving to a new area; getting another major health problem or disability. For people who grow up with sight loss and feel well-adjusted to it, some of the feelings described may still arise around milestones of independence - for instance in late teens when friends are learning to drive.
Relatives, partners and close friends may find they also have a similar range of responses to those described as they also adjust to the changes.
What might I expect?
The process is often compared to bereavement and the same range of thoughts and emotions can come into play. As with grieving any other loss, the reactions do not necessarily happen in a particular order, nor does everybody experience the whole range - although they may do so.
Sometimes we can be aware of several of the feelings in a short space of time; sometimes one dominates our mood for a longer period. Sometimes feelings we thought we had "dealt with" return, either at random or in response to further changes in our circumstances.
What are the common feelings I might get?
Shock and denial
Whether sight loss comes on suddenly or a diagnosis is confirmed after experiencing gradual change, shock is often the first reaction. It can be hard to take in the news; we can find ourselves carrying on as if nothing was different; we can forget anything has changed and experience the shock all over again (for instance on waking in the morning). We may continue to do things as if we had our old levels of sight and find reasons not to try new methods of doing things.
Maybe we disbelieve the news or think the doctor has made a mistake. We might hope that further tests will show a different result or keep searching for cures (whether medical or "alternative"). It is of course reasonable to seek a second opinion and sensible to look for further information about treatments. It may also make good sense to try lifestyle changes or use holistic healthcare to support our well-being.
However we may find ourselves frantically seeking further diagnoses even if we are told the same each time, or trusting in "miracle" cures that have no evidence to support them. If the media is full of stories of a new treatment for one type of eye-condition, it can be devastating to find out that it does not apply to our situation or is still at the experimental stage and not readily available.
Denial may be the mind's way of "buying time" to get used to a new situation or experience, but should give way over time as we gradually find ways to adjust to our situation.
Anger and questioning
We may get angry or upset with those around us for not doing enough to help or not helping in the right way. (As the changes are new for them too they may not know the right way to help or may not fully appreciate how we are affected). Maybe we find the services provided by official organisations are not as comprehensive as we imagined they would be or not in place as soon as we need them.
Perhaps there are legitimate targets for anger - for instance if the sight loss was caused by an injury; or if information, diagnosis, treatments and support services were not as timely or accurate as they could have been. Seeking justice or proper explanations and apologies can help us to regain a sense of control.
Sometimes however, we feel angry when there is no obvious external target and this can make us self-blaming or short-tempered with others. We may wonder "why me?" or speculate as to what we did to make it happen, or what we failed to do to prevent it. We can get caught up in searching for explanations of this kind even though they may not help us to change anything.
Anger can be a natural response to unwelcome changes in our circumstances. Being justifiably angry can give us strength to fight back against such difficulties. Questioning how the situation happened is closely linked to this - we are searching for ways to make things better, and trying to prevent similar problems in the future. We seem to need time to explore whether we have the power to change the situation before we can feel ready to move on to adjusting to it.
Helplessness, fear, anxiety
These feelings can follow on from a period of anger and searching and are part of the process of accepting what cannot be changed. Temporarily accepting of our lack of power to change or restore our circumstances can in itself be scary and may even send us back into denial.
Or we may have genuine fears about how we will manage areas of our life that have always been sight-dependent. For many of us, the last time we could not do things for ourselves was in childhood - and that may be a long way behind us. Not being able to do things that others can do, and that we have been able to do since childhood can feel intensely embarrassing, even shaming. As social creatures we may experience these feelings whenever we think we are not as competent as we should be. Gaining new skills can help these feelings recede.
Anxiety can be very strong under these circumstances and is a natural reaction - an internal signal of danger that makes us stop and take care until we have learned new ways to deal with our circumstances. Anxiety should reduce gradually as we get more confident. Panic attacks are not uncommon but can be managed with the right help and information.
If anxiety or panic attacks do become chronic, it's a good idea to seek help from your GP or a counsellor or try a self help book or CD. (No Panic is a helpline especially for panic and anxiety problems - telephone 0800 138 8889 or visit their website).
Helplessness and fear should recede as we allow ourselves to see that although we cannot do things just as before, we can learn to do things in new ways. We may even find new capabilities or interests that we might never have found the time or opportunity to discover otherwise.
Sadness and grief
Most people would see these as obvious reactions but might be surprised by the strength or depth of what they feel.
There may be a background feeling of sadness that seems to be there all the time, or the feeling may arise suddenly in response to a particular situation, or a new realisation. (For instance, not noticing a friend in the street; dropping something and not being able to find it; realising we won't experience looking at nature, or art, in the same way again.)
This can be especially difficult for people who see themselves as "practical" and "good at coping". Some people think that expressing sadness is just "self-pity" and means they are not as strong as they thought. It's true that coping in an emergency can mean we have to get on with things without stopping to take notice of our feelings but many difficulties we face are not this type of emergency. Major life events (such as sight loss) require a longer, slower process of management. Allowing space for what we feel actually strengthens our ability to cope with change.
At times the feelings can seem overwhelming but it is important to know that with time they will get less intense and affect us less often. We are unlikely to be happy about losing something we treasure but we can gradually learn ways to live with the changes it brings.
Depression
When sadness lasts a long time and stops us from seeing any chance of hope - or if we turn anger in on ourselves and become self-blaming - we can get depressed. Depression is a normal response in grieving a loss - it is perhaps a mixture of the feelings of sadness and helplessness - but if it lasts for more than a few weeks and is severe enough to stop us getting on with normal life we may need professional help to overcome it.
So if you persistently feel unable to get up; to eat normally; have disturbed sleep; cannot "be bothered" to see friends or family, or otherwise do what you would normally do, it is important to seek support. Talk to your GP about it, or seek support from a counsellor, especially if you get so low that you have thoughts of harming yourself.
Visual hallucinations
Some people do experience visual hallucinations or illusions - especially after sudden sight loss - and this is a recognised condition called Charles Bonnet Syndrome (CBS). In most cases it is a temporary effect and there are ways of managing it. However, it can be difficult to talk about because of the fear that it might be a sign of mental illness or dementia. Contact the RNIB Helpline on 0303 123 9999 for further information about CBS or to be referred to our Eye Health Team.
Loss of identity, renewal of identity
The changes we experience can feel so drastic that we wonder if we can maintain a sense of who we are. Maybe we will have to change the work we do; maybe it no longer feels safe to baby sit young grandchildren alone; maybe we worry about sight loss being genetic and feel concern that we might pass it on. Perhaps our favourite hobbies have depended heavily on sight - reading, craftwork, art or photography. Maybe we have loved to travel and see the world. Maybe we are keen on sports - watching or taking part.
Without the opportunity to do the things we've always done we may wonder who we are anymore - no longer the breadwinner; no longer the reliable grandparent; no longer the budding artist or the aspiring sportsperson. The fact is that many of these roles will not be lost to us permanently and with the right kind of adjustments will still be possible.
It can also be that in time we discover new careers, interests, pastimes that we would not have found time or opportunity to try without the changes that losing sight brought about. This may seem a long way off when we are still at the early stages of coming to terms but it is important to hold in mind that new possibilities often arise just when we are ready for them.
RNIB's Helpline can help with leisure enquiries and can also refer you through to other specialist teams. Telephone the Helpline on 0303 123 9999 or email at helpline@rnib.org.uk.
Adjusting our sense of identity is a major change - and we might resist at first. Like the rest of the population, we are likely to carry some inaccurate and stigmatising ideas of what it means to have a disability or we may have known someone in the past who did not cope well. (It is important to remember that services and attitudes for people with disabilities are changing and that experiences in previous generations were very different.) Equally, we may know someone who did cope very well but be mystified as to how they achieved this because we were not aware of the process they went through to get to that point.
This ability to manage a new sense of self does not usually happen overnight and each of us will have our own way of getting there. It is quite likely that we will have been feeling better for some time before we realise, by looking back, just how far we have come.
Grieving as a process
Grieving a loss - whether bereavement or the loss of something else that is precious to us - is a natural process and takes time. The range and intensity of feelings can be bewildering but all seem to have a function in helping us deal with difficult life experiences and preparing to continue life in a new way. Most of us do need extra support of some kind when grieving and when adjusting to major changes - whether practical or emotional or both. Seeking and accepting support of some kind is a healthy response to a change in circumstances and not a sign of weakness or failure.
How long will it take
People often would like to know how long this process will last and there is no easy answer to this. Again, individuals and their circumstances vary. It is normal to find that one or other reaction is around for a matter of weeks or even months but it should lessen in intensity or trouble us less frequently as time goes on and we learn to adjust to the physical changes in our lives brought about by sight loss.
Support and understanding from those we share our lives with can be enormously helpful. When ready it can also be helpful to have contact with others who have already dealt with similar issues - for example:
RNIB's Helpline can give you details of all of these on 0303 123 9999 or email helpline@rnib.org.uk
The RNIB Emotional Support Service is a team of telephone counsellors who can offer support with dealing with the emotional issues involved in adjusting to sight loss. The Helpline (and other teams at RNIB) can refer you to us at your request or you can refer yourself by emailing ess@rnib.org.uk. Read more information on the Emotional Support Service webpage or telephone the RNIB Helpline on 0303 123 9999.
Here is a quote from 'William' who chose to use the Emotional Support Service:
"It was so helpful to talk to someone privately, outside my family and friends. The counsellor had time to listen and helped me talk things through. This has made so much difference to my life. My sight isn't any better than it was but the time of being depressed has gone."
Author: Caroline Stedman, RNIB Emotional Support Service - 2009