Getting Started When You Are New to Vision Loss: Part One

Audrey sitting in examining room of ophthalmologist's office

Vision loss can happen suddenly or gradually in adulthood. Each eye disease has a characteristic pattern of loss and progression, so the impact is very individual from person to person. Total and sudden vision loss is very traumatic, and it requires immediate interventions and training. However, many eye conditions impair vision slowly and often in stages. This type of progression provides its own challenges. More often adults with vision loss fall on a spectrum-somewhere between perfect vision and no vision at all. Some may have usable vision and others may have only light perception left. No matter where you are in the range of vision loss, there are strategies that may help you adjust more easily to these life-altering changes.  In this series, the Peer Advisors share tips from their own experiences.  

Audrey Demmitt: My Condition is Retinitis Pigmentosa

Retinitis Pigmentosa causes a slow deterioration of the retina. At first, I could not always detect the vision I was losing, and I often believed I had better vision than I did in reality. My vision was confusing to me and others around me. For instance, I might see a white thread on my black dress one minute but the next minute struggle to see a big house out the window. I started to notice subtle changes and how lighting and the environment could affect what I was able to see from moment to moment. 

Optic nerve/neuro-ophthalmic causes of vision loss for retinitis pigmentosa
ZEv Shulkin, MD
UT SW Medical Center
. picture of optic nerve
Retinitis Pigmentosa

Tips From My Personal Experience

Here are my best tips to help you get started coping with the early stages of gradual vision loss:

1. You may not be able to trust your eyes. Often symptoms like color distortions, lack of contrast, problems with excessive glare, loss of depth perception and sensitivity to bright lights or night blindness may alter your ability to see. I began to trip, stumble and bump into things, so I started to move with caution and to consider getting a cane. It is important to understand your eye condition and learn strategies to compensate for it. Don’t be afraid to ask for assistance. I think you will find that people like to help you. And that will give you a chance to educate them about what is happening. 

2. You may need to think about slowing down, at least in the beginning. I have found that it can be dangerous to keep a harried pace when you are visually impaired. Sometimes your brain cannot “see” fast enough to react to a situation. I have needed to slow my movements and be cautious to protect myself from injuries – even in my own home. For instance, if I drop an object, I bend down slowly with my arm out to feel for things I may hit my head on and protect my face. Also, familiar tasks now take longer to complete. So, I give myself extra time and try not to rush. You may need to ask others to be patient with you when you when you are new to vision loss. 

2.  Objects begin to disappear on you! When there are blind spots in your field of vision, it becomes difficult to find things like your phone. You know you put your phone on the table, but when you first look for it, it is not there! It is in a blind spot!  When that happens, I keep looking and feel around with my hands using them to scan in a pattern.  You may want to read about efficient scanning techniques.

I have to remember that if I don’t see something, it is not there to my brain. For instance, I may walk into a white pole which I did not see. If you don’t see it, you can’t avoid it. Mishaps like this are common and you will learn to respond with humor and grace. It is helpful to learn safety techniques to protect yourself such as the upper body technique shown below.

upper body technique hand in front of face when approaching a cabinet, palm out
Upper Body Technique

3.  Finding and identifying personal items may become very frustrating.  When you are new to vision loss, you may feel like all you do is look for things you need. This is hard when you have to search in a messy drawer or on a cluttered counter. Often, I would knock objects off the surface I was searching, or I would never find the item. I began to use what I called a “basket system” to organize. For example, I have a small basket on my nightstand to hold my Chapstick, nail file and hand cream. There is a basket on the coffee table where the TV remote lives. I suggest that you start the habit of keeping things in their special place and using baskets to simplify your search. Of course, you will have to recruit family or roommates to adopt your system and return items to their right place.  You may also want to read about searching for dropped articles effectively.

searching for keys on bed using searching technique

4. I found that I can use my other senses to do familiar tasks. Instead of struggling along with my impaired vision, I have tried employing hearing, touch or even smell to help discover a new way to accomplish a task. I remember an ah-ha moment when I understood this concept. I was trying to cut an apple and I had my face really close to the cutting board and knife…awkward, right? My vision rehabilitation instructor (instructor trained to teach daily living skills to people with vision loss) said, “Close your eyes, stand up naturally and try to cut the apple using just touch.” It was much easier! I have learned that sometimes I need to abandon the faulty vision and gather clues and information through my other senses. VisionAware offers some guidance on maximizing the use of your other senses.

5.  Public places and social gatherings may become stressful.  I found it exhausting to attend my previous social activities and I began to avoid going out. Isolation can have negative effects on your emotional adjustment. It was helpful to talk to family and a few trusted friends to help them understand  problems I was having in social settings. We were able to work out some strategies to ease my stress. For example, friends and family can provide you a description of the restaurant where you are meeting friends and tell you who is at the table. They can give you a subtle cue when someone offers their hand to shake in a greeting. A family member can direct you to a chair or warn you of stairs approaching. An important first skill is to learn human guide technique, demonstrated below. Awkward moments are going to happen, and most people understand if they know about your vision changes. Give yourself time to practice in smaller social settings with trusted friends and family. Keep going out and soon you will work through most social barriers and build your confidence. 

human guide technique. guide is just in front of person with vision loss, who has her hand just above the guide's elbow with thumb on the inside and fingers on the outside, grasping lightly.
Human Guide Technique

6.  You may begin to feel more tired and experience eye fatigue throughout the day. This is a very real part of adjusting to vision loss. Your eyes are presenting confusing images to your brain and it is working overtime to decipher them. You are using a lot of energy to concentrate on tasks and avoid mishaps. Perhaps you are still trying to keep up at a job that is really taxing your eyes, without the needed accommodations for vision impairment. I remember coming home from work and being so tired that I would fall asleep before getting dinner started and then feel guilty about it. As a result, I learned it is important to give myself a break when needed. Consider closing your eyes to rest them throughout the day and take power naps if you can. Be kind to yourself. Use moisture eye drops to soothe your eyes. Just know it will get easier as you build stamina and get better at being visually impaired.  

Losing vision is a big deal and it affects everything. If you are finding it difficult to manage the changes in your vision, it may be time to seek vision rehabilitation training to help you learn ways to do visual tasks in easier, more efficient ways and to learn about the tools and technologies that can help restore many essential functions. You can do this, and we are here to help! 

Vision Rehabilitation Therapist Appreciation Week

April 11-18 is Vision Rehabilitation Therapist Appreciation (VRT) week. Read Steve Kelley’s post to learn more about what VRTs can do to help people new to vision loss. And, stay tuned for more “Getting Started” posts in this series. Also check out our Getting Started guide for more helpful tips, or you can call our information line at 1-800-232-5463 to get help and to access the audio version of the guide. 

Additional Information 

OIB-TAC Course: Adaptive Low Vision Skills for Everyday Living