Understanding Challenges Our Visually Impaired Loved Ones Face
One of the challenges we face as visually impaired people is the lack of understanding that others have for us. We know they’re not purposefully misunderstanding our challenges or needs...really, how can they if they haven’t experienced what we have experienced? But, that doesn't mean it's any less frustrating or hurtful. In the same way, we could never fully understand the challenges they face in their lives either.
It isn't easy communicating needs
Sometimes it’s really hard, embarrassing, or uncomfortable to ask for help. That means that we aren’t always forward with the challenges we face or what we may need to overcome these challenges. This can cause a gap or barrier between us all. I’m here today to try to help bridge this gap between those of us facing challenges due to our vision impairments and our loved ones who want to know...but just don’t.
I'd like to start by saying that as the person struggling with macular degeneration, we do have a responsibility to communicate our difficulties and needs clearly. If we don't at least try, it will be very hard for anyone to understand us or give any assistance.
Vision loss struggles
It’s pretty well-known that those who are battling vision loss struggle with certain things. Lighting, for example, or not being able to read or see something in small print to name a few. Please try to remember that even these ‘known’ struggles go deeper than they seem. For instance, some of us prefer brighter lighting, while others need it to be dimmer in order to see better.
Some of us can’t stand certain types of lighting, like fluorescent lighting for instance. One of our awesome community members described his struggle with fluorescent lighting as making things look foggy. If this was one of our struggles, it would help our loved ones to know that the lighting caused things to look foggy while shopping with us in a store that has fluorescent lighting.
Each of us is different, even with well-known struggles that accompany macular degeneration. That is really important to remember.
Understanding visual impairment
Often, when we aren’t in someone else’s shoes, we are unable to know all of the challenges that accompany their experiences. Those of us with macular degeneration and vision loss face unique challenges that are hard to foresee without actually experiencing it.
First of all, macular degeneration is a blind illness. It isn't always something people can see about us when they look at us unless we have a seeing eye dog or a white cane. Also, some of us are struggling with the fear of an unknown future with our vision. Many friends and family members can't understand this fully because in the moment we seem to be able to see 'well enough.'
Macular degeneration challenges
Here is a list of important unfamiliar and undiscussed challenges people with macular degeneration may be facing:
- Lack of confidence (being unsure of ourselves and what we can or can’t accomplish due to vision changes)
- Anxiety, fear, depression, and worry (being fearful about an unknown future with our vision)
- Decrease in mobility (due to worrying about falling or running into something)
- Loneliness (feeling alone or even misunderstood)
- Social exclusion (public places without adaptations for the visually impaired, like menus with small print that are hard to read in restaurants)
- Feeling like a burden (loss of independence and struggling to ask for help)
- Lack of knowledge of services available for assistance (or even lack of knowledge of the use of technology since many AMD patients are older and have less experience with it)
- Poverty (being unable to afford resources like insurance, doctors visits, surgeries, injections, medications, vitamins, food, adaptive devices, and public transportation)
It's HARD to ask for help
Oftentimes, we don’t discuss these challenges because they’re more emotional than physical in nature. It may be easier to ask someone to light up a dim hallway than it is to ask for time spent together to not feel so lonely.
If you are a caregiver or loved one of somebody with macular degeneration (or somebody going through any difficult diagnosis, really), please read that again and let it sink in. It can be really hard to communicate personal and emotional needs and ask for help.
The importance of communication
To those of us struggling with some of the things listed above, please consider communicating your needs with your loved ones. I am a teacher by day and work mostly with children and tell them all the time, "I can’t help you if you don’t tell me what’s wrong." This rule applies to everyone (but it’s much easier to say to a child). Don’t be offended, it’s the truth.
If you are a loved one of a person battling macular degeneration, please ask questions. If you show that you're open and wanting to better understand, it may open the floor for an easier discussion.
We can only help each other if we know what help is needed. Communication isn’t always the easiest thing in the world to do, but it can be such an incredible tool for bridging that gap! Wouldn't you want your loved to communicate their struggles and needs with you so you could be a better help to them?
Communicate and connect,
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