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The Five-Stage Process of Being a
Successful Low Vision Patient

by: Southwest Low Vision 1-888-534-4321

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There are many barriers of being a successful low vision patient, that is, in using low vision devices successfully. Not only are there many optical laws and rules, but the most difficult hurtles are those in our head and our heart.

I have noticed that there are definite psychological stages that many persons go through before they become a successful user of visual aids. No longer will "one pair of glasses" do it all. Probably the first harsh reality that a low vision person must face is that a single pair of glasses will not help his or her vision. The reality that the person must hold a magnifying glass or use separate reading glasses and hold materials very close to his or her eye is often too much to bear.

STAGE 1 - I REJECT IT!

This stage is characterized by a person's quick snap decision that "this low vision stuff is not for me". People at this stage will quickly reject any new information or suggestions without taking time to think through some of the new options that are being presented to them.

It is almost as if these new ideas are "too big" or "too scary" to let them soak into their psyche. This quick snap response is a key sign that this person will resist having anything to do with thinking through what is being presented.

What is really going on is that the person who has a recent vision loss does not really know what to expect. As a result, his or her expectations are often unrealistic. It is not the person's fault. It only means that he or she needs to be educated on the rules of the game, then take time to process the information, and finally let it sink in slowly.

Usually, no one has told them what will be expected of them, not their Doctor nor their family. They are suddenly confronted with unusual devices and things that they have not heard of before and rather than going to the Doctor and getting a pair of glasses, he or she is confronted with the reality that this low vision process is going to take a lot of work. It's not going to be easy. They experience a big "let down psychologically" and for some, this let down is so large that they must first push it away and reject it.

It is like handing somebody a big heavy watermelon and telling him or her, "Here, swallow this!". It is just too large and too big to comprehend. There is so much to learn and so much work required to accomplish the task, it feels like carrying around a big heavy watermelon.

The goal, however, is that by cutting the watermelon into small bite size pieces, the process will go along very easily. Unfortunately, one must go through the process to reach this realization.

STAGE 2 - I'LL IGNORE IT!

As we mentioned in stage 1 the overwhelming feeling can be too much to bear and during the weeks and months following an initial exposure to low vision devices persons often act as if the problem will go away.

How many times have I heard patients tell me that they took the visual aids and stuck them in the top drawer of their desk as if they believed that ignoring the vision loss, would make the problem just magically disappear. Stage 2 people will secretly go into their room, put on the reading glasses for several minutes, try reading and then spend the rest of their day acting as if it never happened.

It's almost as if it were not them trying these new lenses but their evil twin brother or sister. It is easy to spot stage 2 people because they are the ones that are relying on their family or friends to read to them. They are the ones that say "It is too dark in this restaurant to see the menu" and even without asking assume that their spouse or family member will automatically read to them because of their new dilemma. Some people even experience their first surges of anger during this time and often take it out on those closest to them. Actually, we know these feelings are quite normal and of course you are going to be angry when loosing something as precious as your eye sight, but somehow it is too early in the process to have an open and honest talk about it so it comes out funny and awkward and sometimes with clenched teeth or angry jabs.

STAGE 3 - I'LL EXPLORE IT!

In this stage the low vision person has had time to be exposed to many different low vision options and tools. They may not have been the most "hard-working patient" up to this point, but now they seemed to have turned a corner. They seem to at least listen to what is being said and even glanced down and made eye contact with the different devices being described. Yes, they may even ask a question or two as if this process was "as easy as pie" to them.

But don't let this fool you, this person is still not ready and they have only just begun to slice the watermelon and sample a few bite size pieces.

At this stage, some persons often regress to behaviors that were seen in stage 1 and stage 2 as if they were going backwards. Full outright denial coupled with anger is a characteristic of "sliding back", yet we know that this sort of behavior is actually normal. That is, persons must be given a chance to go at the speed they are most comfortable with and some of us are much slower than others.

I have had persons reach this stage and fully reject everything that has been said at the end of a low vision appointment and not return for services for six months, then at the end of 6 months they tell me "I just wasn't ready then, but can I come back now and see what is available to help me to read?".

Others may not have as difficult of a time during this stage but explore using several items, some may even use the items several times a day as they get used to the awkward experience of using low vision aids.

Still others who are at this stage can seem as though they are well adjusted and would be glad to show you the six or seven pairs of glasses that they have which help them. These persons "make up their own rules" and often try to "prove" to others that they are doing fine because "Look at how many visual aids I use!" What they are really saying is that they are not open to professional guidance and by accumulating many types of glasses and lenses, this shows that they are doing just fine.

The main task of this stage is coming to terms with the underlying feeling that you are different. It is coming to terms with the reality that using these aids makes you look different, feel different, and can no longer escape the fact that you are living with a disability even though it may not be as obvious as a person who is using a wheel chair. This new disability is not a part of one's self image, nor is it something that they have chosen, nor is it something they thought would happen to them.

All these realities take time to sink in and are different for each person. People who have a strong support system and who can talk out their problems often come to a quicker resolution than those who do not. People who isolate themselves always do much worse than those who can talk about what they are experiencing, even if they have to force themselves to do so.

Those who seem to do the best are those who take advantage of the many low vision support groups or self help groups that offer an opportunity to "normalize" and "validate" a persons feelings by sitting in a room with others who experience the exact same feelings. Often, not even the most supportive family member can relate to some of the feelings that a support group (the person's "new family") can relate to.

It is important to know, however, that some people use a lot of "emotional energy" to come to grips with their situation which can sometimes cause depression or a feeling of despair. Some depressions are actually known as "friendly depression". It lets a person know that they are indeed working hard towards a solution and simply feel tired. Many people feel this type of depression very strongly just before a huge breakthrough or change they are about to make. For others, however, research of people with low vision shows that a more severe form of depression is common, even more common than for persons diagnosed with cancer. People should not feel bad if they have to seek professional help at this point.

STAGE 4 - I'LL USE IT!
By this stage, the low vision person and his or her family have experienced a roller coaster of emotional experiences and have had to confront such important issues as self image and the abundance of knowledge about using low vision devices. During this stage, glimpses of acceptance and even strong glimmers of hope, which have been totally absent up till this point, become visible. These new glimmers of hope can be a very strong motivation to continue trying and refining the process of determining which visual aids work best for me in which situations.

Although the visually impaired person during this stage has not had a broad range of experiences in using a variety of visual aids, they are refining their skills on one or two aids and becoming "an expert" in the tasks that are most important to them. After feeling strong and confident in the use of one or two of these aids, the person will look beyond what they currently use and begin to open up to all the possibilities of the myriad of devices and want to learn more on how they can be used.

They begin to educate themselves by reading low vision newsletters, joining organizations, or perhaps attending conventions where low vision lectures and exhibits are presented. At this point, it may seem a whole world away from the first few weeks or months when that person was diagnosed. Even though some of the initial feelings creep back in, they only stay for a short time and often can be overcome with the new inner resources the person has found.

Sometimes, on bad self esteem days, a person may feel like hiding their vision problem - and that's okay. We know that good self-esteem days can often outweigh the bad and it only makes the process worse when the person is hard on himself of herself on a bad day. Somehow to have a quiet but encouraging inner voice pushing you along saying "you're doing fine - keep going" is the turnaround that is needed. Having a support system and a telephone buddy or two may also be important at this time. Making friends with other visually impaired people is extremely important.

STAGE 5 - I'LL EMBRACE IT!
There are some people who I call "stars". "Stars" are people who I have met on my low vision journey that amaze me. These "stars" are not only an inspiration to me and others; they also seem to sometimes surpass themselves in the things they are able to accomplish with low vision. Many people often place these persons "on a pedestal" or say how "amazing" they are, not taking into account all the work they have done and all the dues they have paid to get to this point.

Not all persons reach this stage of embracing their disability, but once you have met a person like this you will know it. They are often the ones who reach out to others and try to help in any way possible. They are the ones who may live in a retirement center and seek out other residents who may be experiencing vision loss. They hold support groups and seminars, late night chat sessions and even find a way to laugh and be humorous in the midst of severe vision difficulties.

These are the people who not only embrace their vision loss, but also embrace life itself. I recently spoke with a woman who published her first book at age 95 and was working on her second book when she was diagnosed with Macular Degeneration. She was also organizing social events at her local retirement center. With the use of her new CCTV reading machine, she was bound and determined to complete her 2nd publication. What I found so remarkable about her was her attitude and spirit. I know she must have had many difficult dark and lonely times but by the glimmer in her eyes and the tone of her voice, you knew she was the kind of person who was genuine and was embracing her situation. There are so many stories about persons with vision loss that make a difference.

Will you be one of them?