Woman in Her Room - Anne Ancher, 1883
Reactions to being diagnosed with sight loss tend to be similar to bereavement –
you may experience feelings of denial, anger and fear and ask yourself “why me?” It’s important to know that it’s OK to feel like this – these emotions are part
of a process, and there will be a period of adjustment and loss from the life
you used to have to the life you have now. Here you can explore and understand
the most common feelings.
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, and you can find yourself carrying on as if nothing was
different. You may also disbelieve the news or think the doctor has made a
mistake. Of course, it’s reasonable to seek a second opinion and look for more
information about treatments. But you may find yourself frantically seeking
further diagnoses, or trusting in "miracle" cures that have no evidence to
support them. This is called denial, and it may be the mind's way of buying time
to get used to a new experience. It should fade over time as you find ways to
adjust to your situation.
Anger and questioningYou may get angry with the people around you, or with the services provided by
official organisations. There might be legitimate targets for anger – for
instance if your sight loss was caused by an injury, or if medical services were
inadequate. Seeking justice or apologies can help you regain a sense of control.
But sometimes you can feel angry when there’s no obvious target. You might
wonder “why me?” and get caught up in searching for explanations even though
they may not change anything. Anger can be a natural response to unwelcome
changes in circumstances. In questioning how the situation happened you’re
searching for ways to make things better. You may need time to explore whether
you have the power to change things before you can feel ready to move on.
Helplessness, fear, anxietyThese feelings are part of the process of accepting what cannot be changed. This
can be scary and may even send you back into denial. Common fears include:
worries about income and having to be dependent on others to do things.Not being
able to do things that others can do can feel intensely embarrassing, even
shaming and can cause strong anxiety. Gaining new skills and confidence can help
these feelings. But if you find anxiety or panic attacks becoming chronic, seek
help from your GP or a counsellor. You could also try No Panic an organisation for panic and anxiety problems:
Telephone 0800 138 8889.
Sadness and griefThese may be obvious reactions but you might be surprised by the strength or
depth of what you feel. This can be especially difficult for people who see
themselves as "practical" and "good at coping". It's true that coping in an
emergency can mean getting on with things without stopping to take notice of our
feelings, but major life events such as sight loss require a longer, slower
process of management. Allowing space for what you feel actually strengthens
your ability to cope with change.
When sadness lasts a long time you can get depressed. This is a normal response
to loss, but if it lasts for more than a few weeks and stops you getting on with
normal life you may need professional help, especially if you get so low you
have thoughts of harming yourself.
Seek help from your GP or a counsellor if you:
persistently feel unable to get up
are unable to eat normally
have disturbed sleep
cannot "be bothered" to see friends or family, or otherwise do what you would
Some people who have lost a lot of sight can start to see things that aren’t
really there – known as visual hallucinations. This is a recognised condition
called Charles Bonnet Syndrome (CBS). The hallucinations caused by CBS are due
to sight loss only and aren’t a sign that you have a mental health problem. Our information about Charles Bonnet syndrome can give further details and
advice about the condition. You can also contact our Eye Health Information team
if you would like to speak to someone. Contact us via our Helpline on 0303 123
9999. Esme's Umbrella is a campaign group working to build up a greater awareness of
CBS. They can also provide further support and you can contact them via
telephone on 0345 051 3925 or via email email@example.com.
Loss of identity, renewal of identityWithout the opportunity to do the things you've always done you may wonder who
you are – no longer the breadwinner, the reliable grandparent, the budding
artist or the aspiring sportsperson. The fact is that many of these roles will
not be lost to you permanently and with the right kind of adjustments will still
be possible. You may also discover new careers and interests that you would not
otherwise have tried. This may seem a long way off, but it’s important to hold
in mind that new possibilities often arise when you’re ready for them. Adjusting
your sense of identity is a major change and you might resist at first. Also,
like the rest of the population, you are likely to have some inaccurate ideas of
what it means to have a disability. Managing a new sense of self doesn’t happen
overnight and each person will have their own way of getting there. It’s likely
that you will have been feeling better for some time before you realise, by
looking back, just how far you have come.
How long will it take?It’s not easy to say how long the grieving process will last. Everyone is
different. It’s normal to find that one or other reaction is around for weeks or
even months but should lessen as time goes on and you learn to adjust to the
changes in your life.
Talking to someone about your feelings can help. Find out about how to talk to
somebody about your sight loss and counselling.