The emotional impact of sight loss

Written by: Hazel McFarlane, Senior Sensory Hub Officer, the ALLIANCE

Published: 14/10/2021

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Scottish Sensory Hub's Hazel McFarlane shares her thoughts on the emotional impact of sight loss for World Sight Day.

On World Sight Day, Thursday 14 October 2021, I want to raise awareness of the emotional impact of sight loss. While every individual’s sight loss journey will be different, there will nonetheless be similarities. This journey will most likely start at the point of diagnosis, where an individual is informed of their eye condition, or deterioration of an existing eye condition and its trajectory, particularly if it is a sight threatening condition such as Glaucoma or Age-related Macular Degeneration (AMD).

One of the aims of the See Hear Strategic Framework for meeting the needs of people with sensory loss in Scotland, is to ensure that ‘people who have, or develop a sensory loss understand what this loss will mean for them’. However, ‘what this loss will mean for them’ will vary from person to person and will be influenced by the actual or anticipated extent of vision loss, the life stage and circumstances of every individual as they embark on their sight loss journey.

Until relatively recently, the rehabilitation of individuals following sight loss focused on the practical aspects of daily life; adaptation of independent living tasks and getting out and about using (if required) a mobility aid such as a long cane or guide dog and where relevant, the retention of, or return to employment. While the emotional impact of sight loss remained invisible, ironically unseen, unacknowledged, unrecognised, consequently, unsupported and unspoken by those affected by sight loss. The pioneering work of Dr Mhairi Thurston, driven by her own experience of sight loss, has not only given voice to the emotional aspects of sight loss; it has fundamentally altered the perception and understanding of the significance of the emotional implications of sight loss.

Dr Thurston suggests a theoretical model of common transition from sight to blindness, starting with diagnosis, coping with deterioration of sight, experiencing loss in different areas of life, experiencing changed perceptions of self in relation to society, experiencing others in a changed way and experiencing rehabilitation.

Dr Thurston suggests that the experience of acquiring sight loss can be understood by thinking of it as a process involving different stages.

Stage 1: Diagnosis of a sight condition leading to significant vision loss.

For many individuals attending an eye clinic appointment, the news that they have a sight threatening condition, have irreversible or untreatable sight loss is often, unexpected. Panic, shock and fear are typical responses to a diagnosis.

Stage 2: No outward signs of sight loss/hiding sight loss/not wanting to be different/resisting rehabilitation.

During this stage there may be no outward signs of sight loss, individuals may have developed coping strategies to conceal or hide their sight loss. In many respects, this stage may be regarded as a phase of denial.

Stage 3: The point of impact/enforced lifestyle changes due to sight loss/multiple losses.

This stage represents the point where sight loss begins to impact on a person’s life, so that there are enforced lifestyle changes. For example, the loss of a driving licence or inability to get out and about unaided.

The point of impact may represent a variety of losses for an individual in terms of the loss of their sight, associated feelings of grief and the grieving process, compounded by practical losses and a realisation that life can no longer be lived in the same way prior to sight loss.

Stage 4: Engagement and rehabilitation/public signs of sight loss e.g. using a long cane or guide dog ‘coming out’ as a blind person.

For those experiencing significant sight loss, the realisation and acceptance of requirement to use a mobility aid such as a long cane or guide dog, to enable self-navigation outdoors is a key emotional hurdle. This requires a recalibration of self-identity, in effect, ‘coming out’ as a blind person and societal responses to this. This is particularly problematic because of the social meanings ascribed to aids such as long canes and guide dogs.

Stage 5: Acceptance of sight loss/possible reconceptualisation of self and of condition.

The final stage is where a person accepts their sight loss, possibly through the reconstruction of self-identity and reconceptualisation of their eye condition. For instance, perceiving their eye condition as life changing as opposed to life threatening. Strategies such as retaining a positive mental attitude, ‘looking on the bright side of life’ may be employed during this stage.

The model offers a process through which the transition from sight to blindness can be understood. It is not prescriptive and is not a straightforward linear process. It highlights the need for different types of emotional support at differing points of the sight loss journey. For instance, at the point of diagnosis, support from a front-line, Eye Clinic Liaison Officer (ECLO) to help with the shock and panic of diagnosis, while counselling support may help individuals come to terms with multiple losses at the point of impact. Counselling may also assist at Stage 4 when individuals may be encountering a change in identity – ‘coming out’ as a blind person and dealing with social reactions, assumptions and social oppression.

Dr Mhairi Thurston and the Royal National Institute of Blind People (RNIB) have been instrumental in recognising the importance of emotional support and access to counselling services for people experiencing sight loss. The RNIB Eye Clinic Support Services, provide ECLO support at the point of diagnosis in eye clinics across Scotland (and the UK). Not every eye clinic has an ECLO service – placing those encountering sight loss at a distinct disadvantage in terms of making a positive transition and acceptance of, sight loss.

I would like to thank and acknowledge Dr Mhairi Thurston who provided me with ‘The Five Stages of Sight Loss’ and Amanda Hawkins, Strategic Lead, Counselling and Mental Health, Confident Living and Skills Development, RNIB.

The RNIB Need to Talk Service offers counselling services to people with sight loss. This can be accessed through the RNIB Helpline: 03 03 123 999. For further information on ‘The Five Stages of Sight Loss’, please see the publication (this link will take you away from our website) and journal article (this link will take you away from our website).

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