Coping with a Diagnosis

Vision loss can happen suddenly or can be gradual as part of a long-term health issue. Regardless of the onset, it can be life-altering. The thought of losing one of our most valuable senses can cause feelings of fear for ourselves, for our families and uncertainty for the future. However, supports for the affected person and for their families can help with the transition to a new lifestyle.

Diagnosis

The time of diagnosis can be difficult and many different emotions can arise. For some people, it may be quite distressing, upsetting or overwhelming. People often struggle to understand how this has happened and how they will cope now and in the future. If you feel like this, you are not alone. There is no need to feel guilty about these feelings. It is important to find support for your situation and to have a way to express your feelings and thoughts. The initial feelings that people experience after a diagnosis can include shock, denial and despair. These feelings will lessen as time passes. While it is natural to feel like this after such a life-changing diagnosis, it could help you to talk to a healthcare professional or a counsellor.

At such a challenging time, engaging in psychotherapy can help. Working with a psychotherapist in a safe, trusting and non-judgemental environment allows the individual with sight loss the time and space to make sense of what is actually happening to them, away from the pressure of well-meaning, but often ill-informed and anxious, family and friends. With the appropriate support and guidance it is possible to work through and overcome difficulties to find new and life-enhancing meaning and purpose in living.

The National Eye Institute/National Institutes of Health (NEI/NIH) have some useful videos, including this one ‘How Can People With Low Vision Maintain a Positive Outlook?

Identity

The changes that a person with sight loss may encounter can be practical and psychological. Some people may have issues with their sense of identity, as they transition from a sighted to a partially or non-sighted lifestyle. This is very common and many people find it difficult at first. Adapting to the new way of living is unique for each person and this uniqueness should be respected by all who offer assistance. The transition can be aided by supports to help adjust to the new way of life and if necessary, to rebuild confidence and increase independence. People make this transition every day and continue to enjoy life with new or adapted careers, new or rediscovered hobbies.

Relationships

Sight loss can also affect the people in the individual’s life including partner, children, parents, extended family and friends. These effects can vary given an individual’s circumstances, for example the effects on a family when a young child is diagnosed can be different from those surrounding a teenager or young adult, and different again from when an adult is diagnosed. It is natural for the people in your life to go through a range of emotions and concerns too. Adults may be concerned by the relationship with their partner, with fears that they may become dependent on their partner. It is advisable for couples to talk to each other about things that the visually impaired person can do themselves and what areas they would like support with. Helping needn’t result in taking away independence. Sight loss may change and this may determine how much assistance or support is needed. Being a parent with sight loss can add challenges to your relationship with your children. However, while you may need to make adjustments there is no reason for your diagnosis to stop you from parenting your child. Talking to children about your sight loss can help them understand what you can see and how it affects you. While children and grandchildren will want to help you, it is advisable to try to be as independent as possible for as long as you can.

The NEI/NIH have some very informative videos on low vision, like this one ‘How Can Family Members Help a Loved One With Low Vision?

For Parents

If your child has been diagnosed with a visual impairment, it is important to remember that, despite the diagnosis, your child has not changed. Your child is a person that is much more than the threat of blindness. Children are more aware of things than we give them credit for, and so it is important to be honest and answer their questions truthfully and compassionately. Ideally, a child should be told about their diagnosis in an age-appropriate way by a loving person who is close to them. If a child isn’t told about their diagnosis but then discovers information from sources other than the family, for example overhearing a doctor’s conversation, over time this can foster mistrust and resentment. However, there are many supports and outside help available to parents, so that they don’t have to do everything alone. Parents can often feel that they must be the sole doctor and carer and nurse for their child. However, this can be an overwhelming and impossible task. Outside help can support those roles to allow parents to do the very important role of being parents to their child.

Supports in your Area

While it is helpful to talk to family and friends about your situation, it might also be helpful to talk to people who have had similar experiences to you. They might have an understanding of what you are going through that your family or friend may not. Your local sight loss charity can connect you with such people in your area. Your partner, family and friends can also find support at your local sight loss charity. You can also find information about activities or events that are available for people with sight loss in your area. They can help you with information and advice on getting the help and support that you need, including accessing emotional support, counseling, vision rehabilitation supports and information on services within your community.

Please see the member charities of Retina International for a local sight loss charity near you http://www.retina-international.org/our-members