Individuals who experience sight loss can feel devastated. The adjustment they have to make often means leaving behind a world of independence, to accepting a new reality where asking for help becomes a new norm.

This experience can bring about emotions that are similar to the grieving process as described by the psychiatrist Elisabeth Kubler-Ross. This guide uses the five stages of grief to help those who have lost their sight to understand their emotional experience.

Denial

Your first reaction to learning about your sight loss might be denial of the diagnosis: “This isn’t happening; this can’t be right.” Denial is a common reaction. It is a defence mechanism that cushions the immediate shock of your loss; it is also a way of numbing your feelings of shock and stop you feeling overwhelmed. You want to block out a reality that might change your life forever. Denial is usually a temporary reaction that carries you through the first wave of devastation and pain.

Anger

Anger is an intensely raw emotion that emerges from your vulnerable core self. You may find that you are angry with complete strangers, family members, friends or even a higher power. The doctor who diagnosed the illness might become a target for your pain. Do not let your anger cloud your judgement. Ask for clarity if you are confused; make sure that you understand your treatment and your options. You might want to ask where you can access immediate emotional support.

Bargaining

When you feel helpless and vulnerable, it is a normal reaction to try and gain control through a series of “if only” statements, such as: “If only I spoke to my GP sooner…”, “If only I sought a second opinion…” or “If only I had taken better care of my health…”. At this stage you feel a lack of control and you are not ready to accept the reality of your condition. You may even try to bargain with a higher power or yourself to make your eyesight recover.

Depression

When it comes to loss there are two types of depression that you go through. The first is a reaction to the practical implications like losing your job, the ability to drive, or a loss of independent living. You may be worried about your future finances. Once the loss is understood, coming to terms with the lasting effects of your condition can result in bouts of crying, loss of concentration, or lack of sleep. It’s important to seek emotional support when you feel like this. The second type of depression is more subtle and, in a sense, perhaps more private. You quietly prepare to let go of your life as a sighted person.

Acceptance

Acceptance is a stage of grieving which strangely may feel like a gift. Acceptance of one’s sight loss does not come to everyone. Some people are never able to let go of their anger; some people stay in a state of denial. However, acceptance is a stage of loss that is marked by withdrawal and calm. In this final stage of grief, the sadness may still be there, but moving forward is now possible.

Keeping yourself safe and getting through the trauma

Don’t

  • Isolate yourself (unless you have to, e.g. due to illness).
  • Bottle things up.
  • Think you are weak for needing help.

Do

  • Talk to others, share your thoughts and feelings with your family or friends.
  • Ask your medical centre if they can recommend a support group.
  • Get plenty of rest, make sure you take some time for yourself.
  • Give yourself time and permission to feel those upset feelings.
  • Tell people what you need from them.

This information is also available in Welsh: download the Welsh PDF