Why Low Vision Patients Are Upset and Addressing Their Concerns

March 2020

By Richard J. Shuldiner, OD, FAAO, FIALVS, Chief Clinical Editor

In 1960, Wayne F., at the age of seven, was diagnosed with amblyopia in his left eye that was left untreated. As an adult, Wayne scheduled regular eye exams every few years and received new glasses each time the vision in his right eye changed. In November of 2019, it was time to renew his driver’s license. During all previous DMV visits, Wayne could read the vision charts with the help of glasses. This trip was different.

Wayne’s vision had slowly reduced to the point that the DMV eye chart was impossible to read, and, to his surprise, his license was revoked. Wayne scheduled an appointment with his eye doctor to again get new glasses. He expected that a new prescription would improve his vision enough to get his driver’s license reinstated. He intended to get new frames and a new look. That’s when he received the news that dry macular degeneration had developed in the right eye and new glasses would not improve his vision. He was told “nothing more can be done”.

Wayne was devastated. Confusion and worry took over as he asked himself “How will I get to work? How will I pay the mortgage? How will I support my family? What will become of me?”

ALL low vision patients are upset. 

Every one of them. And it doesn’t matter if they seem to accept their situation, have a happy disposition, a good attitude or have “accepted” it. They are upset.

As we know, Wayne is not alone. Many patients, like Wayne, are struggling with the shocking news that new glasses will no longer restore their vision. Loss of vision is one of the major fears that people have. When it happens, the upset can be truly debilitating.

What exactly is “low vision”? There are many ways to say it, but for me, this is the most understandable: Best corrected vision is insufficient to do what you want to do.

The definition contains two variables: vision and task. The amount of vision there is to work with and what does the patient want to be able to do. A person with no visual goals does not have low vision, regardless of the extent of vision loss.

Consider the plight of most of the low vision patients we see. They have had decent vision most of their lives. They have needed glasses at some point, for any of the refractive reasons, including presbyopia. Some solved those issues with glasses, some with contact lenses, some with vision therapy and some with a surgical procedure. But in each case, they were able to see well enough with these solutions to do what they wanted to do.

Now, after scores of eye examinations every year or two or in some cases, three or more, they don’t see well again. They make another appointment with expectations and intentions for the visit: new, stylish frames; better contacts; clearer vision to enjoy life and be productive. It doesn’t happen.

Instead, they are told they have an “eye condition” that has caused them to lose vision permanently!
And, they are told that if there is a treatment, it won’t bring back the vision they have lost!
And, they may lose more vision!
And it could happen at any time!
And they might go blind!
And lastly, they are told “there’s nothing more we can do”!
Each sentence stabs like a knife.

Surprisingly, there are only three things that upset human beings.

  • Unfulfilled expectations
  • Thwarted intentions
  • Undelivered communications

Think about anytime you have ever been upset. Regardless of the circumstances, regardless of who you think was to blame, regardless of what “they” did, regardless of the topic or whom it was with, the upset falls into one or more of the above three categories.No one expects to lose vision permanently.No one expects to hear these eye doctors’ words: “there’s nothing more that can be done”.The expectation is that the doctor will have something to solve the problem. The intention is to get new glasses, see better, get new frames and have a new, fashionable look. They walk out in a daze, unable to communicate or even think clearly.

Upset Reactions
There are three things that happen to a human being when they become upset:

  • A shift in reality
  • A loss of affinity
  • A decrease in communication

Everyone knows not to make decisions when upset. Why? Because the shift in perception of reality causes bad decisions. We’ve all experienced a reduction in both love and appreciation when upset with a loved one. And, we all know that getting someone to open up and communicate when they are upset is nearly impossible.

Words From the Eye Doctor

Life is full of unexpected and upsetting events and, like a flash of lightning, life can change. One such event, like being told you have Macular Degeneration (or some other vision affecting eye condition) and that new glasses won’t help, becomes so upsetting that clear thinking is virtually impossible. What I’ve seen over the years in working with low vision patients is a state of chaos; a state of not knowing what to do, who to go to or how to deal with permanent vision loss. Confusion and fear take over as people have no idea what their life will be like or what they should do.

Give Them a Future
When faced with “going blind”, all the hopes and dreams of the future are demolished. The idea that they will have time to read the great novels, travel to see the famous sights, see the grandchildren play their sports and more are ended in their minds. The future they have imagined is gone.

People need a future to live into. You can give them that and reduce the upset they are in.

I suggest saying this: “There is life after vision loss. There are low vision doctors who can help to keep you doing those things you love. Google ‘low vision’ and you’ll discover a world of help. Your life is not over.

However, you say it, let patients know that LOW VISION CARE is available and fulfilling life is attainable. It is inauthentic to say “nothing more can be done” when low vision glasses (i.e. telescopes, microscopes, prismatics, filters, etc.), low vision devices, adaptive technology, large print materials, and auxiliary professionals like Occupational Therapists and Orientation/Mobility specialists are available to help.

Lastly, referral of vision loss patients is now the Standard of Care.