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Our Admin and Communications Officer Karen, who is herself visually impaired, gives some thoughts on the emotional challenges of experiencing sight loss.

Living with sight loss, whether this has happened suddenly, gradually or from birth, poses practical challenges in how to live independently. Meeting these challenges can involve rehabilitation, the use of aids and equipment, or finding new ways of doing things. But how does sight loss affect a person’s emotional life, identity, and mental wellbeing? A major life event such as sight loss involves many emotions and can take time to process and adapt to.

One model that can help people understand the process of coming to terms with sight loss is the ‘Five Stages of Grief’. The stages are denial, anger, bargaining, depression, and finally acceptance. Many people coping with losing their sight have told us that their journey has followed a path similar to this model. However, it is important to note that coming to terms with sight loss is not a straight line. The stages are not always experienced in precise order and going back and forth between stages or jumping a stage is not uncommon.

Denial

In this stage a person might feel overwhelmed by their situation and may be in shock. Processing a sight loss diagnosis is difficult, and as a protective mechanism some people may deny the reality of the new situation. Some may disbelieve their diagnosis or attempt to carry on as if nothing has changed.

Anger

Anger can be a way to create emotional distance from the discomfort of facing a new reality. It is a way to express emotions without feeling vulnerable or admitting feeling afraid. Some may be angry that their sight loss is the result of injury or inadequate medical care and seeking apologies or recompense can help regain a sense of control. But sometimes there is no obvious target for anger and people may be left asking ‘why me?’

Bargaining

During this stage it is common to feel very hopeless, and bargaining is a way of having some perceived control. It’s common to feel regret and look back and wish things had been different: ‘If only I had looked after my health more, or seen someone sooner, or…’. It can also be a time when people bargain with a higher power and promise to do anything to have their eyesight restored.

Depression

During this stage the initial shock has passed and people are faced with a reality that feels difficult to cope with. There may be worries about the practical details of the future such as finances, remaining independent, or giving up work or driving.  There may be guilt about having to rely on other people, with partners becoming carers or children taking on more responsibility. If people are not able to do the things that others can do, they can feel embarrassment, a sense of shame, and anxiety. Gaining new skills and confidence can help these feelings. This stage can also be an isolating phase where people pull back and are less likely to reach out to others. Talking to a GP, or to your local Sight Loss Advisor is useful during this stage.

Acceptance

Acceptance brings a sense of calm. People at this stage no longer need to fight their new reality and can move beyond depression and the survival tactics of denial, anger and bargaining. Feelings of pain and sadness about sight loss sometimes remain, but it is possible to move forward and be at peace about having sight loss.

Identity

In addition to the five stages of grief, sight loss can affect a person’s sense of self. Needing to ask for help or struggling to be independent can challenge feelings of being a capable person and may lead to feelings of embarrassment or shame. These are normal feelings and experienced by many. A way through this is both finding ways to adapt and become as independent as possible whilst accepting that it is ok to ask for help if needed, and that this doesn’t affect who you are as a person. Often asking for help is a way of being independent.

Some people feel that they have lost some of their roles in life. But many of these roles (e.g. doting grandparent, keen sportsperson) are still possible with the right adjustments. It might be that new interests and careers are identified that would not have been pursued previously.

One other thing to bear in mind is that society will often have inaccurate portrayals and ideas of what it means to have a disability, and many people experiencing sight loss may be unaware of what is possible. For these people, finding others living with sight loss helps with gaining an understanding of how an independent, enjoyable and meaningful life is achievable.

All of this emotional processing can take time, and the five stages do not necessarily occur one after the other, or at the same intensity for each person. Some things which help with navigating the intense feelings that can arise during the process include:

• Sharing your thoughts and feelings with your family or friends.
• Looking for a support group.
• Looking after yourself physically, getting plenty of rest and making sure you take some time for yourself.
• Giving yourself time and permission to feel those difficult feelings.
• Telling people about the support you need.

“It took me a really long time to accept that my sight loss was permanent. For several years, I did not use a cane or ever ask for support – I guess I was in denial. Eighteen years on I am in a much more positive state of mind and although there are times when I feel frustrated about having to use public transport or inaccessible services, mostly I feel good about life.”

‘’I found it very difficult to accept my degenerative eye condition and worsening sight until I was in my 40s, it was something I never wanted to discuss and felt quite sad and even embarrassed about. I have since come to accept that this is my reality and being around other blind and VI people has been so important as it has shown me that I can live a great life despite having a severe sight impairment. I no longer fear my future.”

‘I am in a much better place than I was before and fundamentally this is because I have accepted my sight loss and no longer focus purely on what holds me back from doing, instead I focus on what I can achieve. The crictical change for me was when I began to reach out and look for other people going through similar experiences as myself.’

If you feel you need further support, our Sight Loss Advisors are here to talk, and can help with resources and advice.

If your feelings are causing you distress and you are struggling to cope, please consult your GP who will be able to help you. Or the Samaritans are available if you need to talk day or night on 116 123.

There are specialist counselling services available for those with sight loss, please contact us to discuss the different options and other ways we might be able to help.