Emotional Adjustment to Vision Loss: It’s A Family Matter
by Sylvia Stinson-Perez, MSU, CVRT, MSU OIB-TAC
Vision Loss Can Be Traumatizing
Vision loss, and even the diagnosis of an eye condition, can traumatize anyone experiencing it. Age, experience, and a person’s personality and level of self-esteem all play a key role in their ability to respond to life’s challenges. This includes adapting to the onset of a disability. However, it can be, and often is, just as difficult for the loved ones around them. Visual impairments often create feelings of immense loss or grief. Consider the many losses experienced: A person might not be able to see or recognize the faces of those they love, feel confident managing finances, read mail or see the computer or phone screen, find things easily, eat without paying close attention, walk without fear of falling, or get around independently. These changes would be challenging for anyone, and when you add the other challenges of aging, such as balance issues, hearing loss, and memory lapses, it can feel overwhelming.
People often only focus on the individual diagnosed with visual impairment, but remember that the entire social network around the person is also impacted. When a person loses the ability to perform everyday tasks and experiences the significant emotional and social ramifications of vision loss, someone has to step in to help. This often means loved ones become the driver, cook, housekeeper, banker, and so much more. Unfortunately, if a person does not learn the adaptive skills that can help them regain their independence, this can become a long-term role for the loved one, who then becomes a caregiver.
Dean and Naomi Tuttle, in the “Stages of Adjustment,” talk about the seven phases of adjusting to vision loss (2004) and they are outlined below. It is important to note that there is no set duration for these stages. People can cycle through these stages repeatedly as they experience additional levels of vision loss or changes in their lives.
Seven Phases of Adjusting to Vision Loss
Phase 1: Trauma. Unexpected vision loss is traumatic and frightening. It is overwhelming and usually totally unexpected to realize you cannot see or eventually will not see well enough to function in the way you always have. Most people have never met another person with a visual impairment, or at least they do not think they have. Everyone has attitudes and generalizations about what disability and blindness look like. Suppose your view of a person with a visual impairment is of someone dependent on others and helpless. In that case, that is how you will feel about the capabilities of someone diagnosed with a visual impairment, including yourself or a loved one. However, suppose you have observed a person with vision loss living independently, getting around on their own, and even working. In that case, you might have a more favorable outlook on the ability of yourself or your loved one to adapt to vision loss.
Phase 2: Shock and Denial. Usually, a person who starts experiencing vision loss will get an eye exam to determine the cause. Suppose they receive a diagnosis, such as macular degeneration, diabetic retinopathy, or glaucoma, and are provided information on the progression of that conditions. In that case, they are likely to experience shock and denial. No one wants to believe that they have a disability, that their life will change, that they will have to change the way they do things. Often there are thoughts of and conversations about getting the right glasses, treatment, or even a second opinion, which is appropriate. However, accepting the reality that you or your loved one has received an eye condition diagnosis that often leads to significant visual impairment is critical to adjusting to and living well with vision impairment.
In this stage, most individuals are not ready to seek out help. They feel like they do not need help or will “get better.” Vision may remain stable, but there will likely be fluctuations and even deterioration in vision. Therefore, the sooner someone can start learning adaptive strategies and using assistive devices, the more prepared they will be if their vision declines. And, of course, the easier it will be to cope daily. In this phase, it is time to gather accurate information about the eye condition, the services, and training available and start developing a plan. This information gathering and planning should include the individual and their loved ones.
Phase 3: Mourning and Withdrawal. This stage is often where many individuals get stuck. They withdraw from their regular activities and routines, remove themselves from social and recreational activities, quit or retire from work early, and generally become dependent on their loved ones or move into a long-term care facility. The loss of the ability to drive, see the faces of loved ones, and so many other common losses associated with vision loss will bring up feelings of grief. Grief is normal. Recognize that the loss of vision is significant and not one many ever truly get over.
Acknowledge this loss for the entire family. The inability to drive means a loved one will likely have to help with transportation until the individual finds other options, and possibly forever if there are no alternatives. The loss of the ability to see faces means they can’t see the faces of their grandchildren anymore. This hurts the person who cannot see and the one who wants to share the activities or photos of happy moments. Give permission to feel sorry for losses. People need to talk about these losses, including the loved ones who are also feeling the loss. Sadness and sorrow for what is lost are normal. Anger, resulting in outbursts, is also normal.
As a loved one, you may feel helpless and frustrated. However, your attitude and the provision of appropriate encouragement and support towards adaptive skills and strategies may make a significant difference in your loved one’s adjustment and eventual coping and living with visual impairment. Start encouraging a daily routine, peer support groups, problem-solving, and adaptations in everyday life.
Phase 4: Succumbing and Depression. This phase occurs when a person just cannot come to grips with vision loss. It is a feeling of hopelessness and helplessness. In this phase, the person does not want to do anything. They are likely to stop caring for themselves, their grooming may decline, their eating and sleep patterns may change. In this phase, it is so important that people feel heard. This includes not only the individual who has been diagnosed with the visual impairment but also the loved one. Feelings of sadness, frustration, and even anger can arise. Feeling like you are stuck, that nothing will change, can be incredibly difficult. Most people report they feel alone.
Support groups can be very powerful for individuals with visual impairment and their loved ones not to feel alone. They provide a safe and supportive place to express anger, frustration, and disappointment. Support groups are even more useful if you find a network of people who help them find solutions and support creating more inter-dependent relationships with the visually impaired loved one.
Caregivers have their own unique concerns and feelings. Do not deny your feelings or those of your loved one with a visual impairment. While you may want to maintain a positive attitude, recognize you will experience challenges that lead to frustration, self-pity, and even sadness. Despair, discouragement, despondency, and depression related to the situation are normal. However, long-term depression associated with suicidal thoughts is not normal, and professional help through a counselor should be sought.
As noted, sadness, pity, and even situational depression are common and normal. You might hear things like you don’t understand. Feelings of inadequacy often occur with vision loss. Many feel like they are no longer whole individuals. People with a visual impairment must come to a place where they accept that they are still the same person, with personalities, strengths, hobbies, interests, relationships, and challenges. Vision impairment is now one of their challenges. It does change a person’s life significantly, but it does not change who the person is. Helping your loved one feel “normal” and like him/herself is critical as they move forward into really working on adaptive skills and coping strategies. We all have to believe something is possible if we are going to work on taking the steps to make it happen. And, the loved one needs to believe it too..
Phase 5: Reassessment and Reaffirmation. It is at this stage which is generally when individuals start to believe they can regain and maintain control of their life and their independence. This is when the loved ones play a major role in the level of independence a person attains. In this phase, everyone, the individual, and their loved ones realize new ways of doing old things.
In this stage, family support/ fostering independence is critical. There needs to be a focus on strengths or what the person can do and how to promote maximum independence. As a loved one, you may be fearful, hesitant, or worried. However, if you do not promote independence, you will continue to experience the frustration of caring for the loved one with a visual impairment.
Not to be condescending, but one of the best examples involves children. Do you remember, or have you ever seen a child learning to walk or ride a bicycle? They fall down. Depending on what you as the adult says or does, they will either give up or try again. You need to be the cheerleader encouraging them to try again. Yes, as with children, you need to attempt to create the safest environment possible for practicing new skills, but at some point, you need to step aside and allow them to learn.
Phase 6: Coping and Mobilization. This occurs when individuals start developing good coping skills and techniques to live with their visual impairment. One key accomplishment of coping with vision loss is to learn and acknowledge what you can do and what it is easier for someone to help you with, and what you cannot do.
Most people want to be independent. However, most of us are not 100% independent. Developing an interdependent relationship that includes giving and taking or reciprocating with our loved ones gives us all a sense of self-respect. For example, suppose I want to grocery shop as a person with a significant visual impairment and not involve my loved ones in this task. In that case, I need to be willing to request customer service assistance to help me shop since I cannot see the items on the shelves. If I want to get around town on my own, I need to learn to use public transportation or rideshare services. If I do not have access to alternative transportation, I must be willing to ask a loved one to take me places and reciprocate by paying for their gas, their time, and/or buying their lunch.
When the individual with a visual impairment becomes a good self-advocate and starts asserting their independence, the loved ones need to be willing to take a step back and support that independence. Mistakes will be made, but these lead to problem-solving.
Be willing to stand back and wait to be asked for help. Let your loved one know this is your intention. Say something like, “I am here to help, but will allow you to do what you can and want to do. If you need me just ask.” Remind them of this on occasion because it is hard to ask for help. Of course, if you see someone struggling, ask them if they would like help. It takes a lot of energy, concentration, and extra work to be an independent visually impaired person, and sometimes just having someone help can really make a difference. Just don’t make it a regular habit and create dependence.
Encourage them to speak up for themselves. This is very important in doctor’s appointments, when ordering food in a restaurant, and making personal decisions. The more an individual has a feeling of control of their environment, the more dignity they feel.
Phase 7: Self-acceptance and Self–esteem. In this phase, an individual realizes they are themselves and someone of value. They have a visual impairment, which is just one of their many attributes. For the loved one, it is critical that they too gain respect for that person. Feeling embarrassed to be seen with them, feeling pity or frustration, will not help. Mutual respect for one another is the ultimate goal here. Again, each of us has a personality, strengths, and limitations. Acceptance of yourselves and those you love can lead to successful coping and living with a visual impairment by the individual with the visual impairment and their loved ones.
Tuttle, D.W. and Tuttle N.R. (2004). Self-esteem and Adjusting with Blindness: The Process of Responding to Life’s Demands. Springfield, IL: Charles C. Thomas.