Think Before You Speak
For more than 3 years I’ve been helping people with macular degeneration learn about the disease. I have learned from them how they interpret and react to some of the things that are said. I hope that by sharing what I’ve learned, we can all be more sensitive. We need to think before we speak.
This article is for those of us who come in contact with VIPs (Visually Impaired Persons). If you are a VIP and can offer more suggestions, please let us know. We are always learning.
Not everyone reacts negatively to these statements. It depends a lot with whom they’re speaking. Family and friends seem to either get the benefit of the doubt or what they say is taken more seriously and often negatively.
You may recognize some of these statements and responses from dealing with the grief from the loss of a loved one. People with macular degeneration go through the same stages of grief as they deal with the loss of or fear the loss of their sight.
“You just need [fill in the blank: stronger glasses, a different doctor, a better diet...].”
Unsolicited advice is often not appreciated no matter what the issue. Generally, if a person wants advice, they’ll ask for it.
There are ways to rephrase this so that you are offering specific information. “I learned about a great site called MacularDegeneration.net! They’ve got a lot of information and are very supportive. You might want to check them out!”
“What can I do to help?”
There’s nothing really wrong with saying this, but a person with macular degeneration probably doesn’t know what they need especially right after the diagnosis. If you can offer specific help, that would be better.
Here are suggestions of what to say:
- “Is there anything specific I can help you with?”
- “When is your next medical appointment? I’ll be happy to drive you.”
- “How about I take you shopping when I go?”
Understanding central vision loss
“You don’t look blind!”
What is a blind person supposed to look like? I think we have images of celebrities who are blind like Stevie Wonder who wears dark sunglasses and needs a guide to help him get around. People with macular degeneration aren’t totally blind. They are legally blind or have a visual impairment or have low vision. Most often there are no outward signs. Even when you see someone using a white stick (also called a white cane), many of them have some usable vision.
Wet v. dry macular degeneration
“My aunt has wet AMD, and she still drives.”
If this is said to someone with dry AMD, it can sometimes cause the person to be ‘jealous’ of the ones with wet AMD. That’s because many people who are getting injections for wet AMD can retain usable vision. My dad had geographic atrophy (GA) and told me he wished he had the wet kind. Several people he talked to were still driving (he should have stopped, but he was stubborn; he’s lucky no one got hurt) because they were being treated for wet AMD. There’s no treatment option for dry AMD.
“You are still [fill in the blank: working/hiking/biking/skiing]? How can you if you can’t see?”
My friend Sue who also writes for this site gets that a lot. She has geographic atrophy which means that she has a blind spot in the center of each eye’s visual field. She certainly can see with the remaining central vision and her peripheral vision. She works, hikes, bikes, skis, and much more, even though her visual acuity puts her in the legally blind category. She’s learned, and so can others, to use the vision that she has through eccentric viewing which she’s written about.
“You brought this on yourself by [fill in the blank: all those years in the sun, smoking so much, having a horrible diet].
Yes, being in the sun a lot without good sunglasses, smoking, and having a bad diet can contribute to the development of AMD, but they’re only 3 of the many risk factors. You didn’t CAUSE your AMD. We don’t know what does in any individual.
Comparing other conditions
“It could be worse. I know this person who [fill in the blanks: has cancer, had a stroke, lost a limb…].”
Again, this may be true, but when it happens, especially right after the diagnosis, most people can’t imagine anything worse. This is especially true if they are wrongly told they’ll go blind or one of the other myths.
“My father’s aunt on his mother’s side had it. She cured herself by [fill in the blank: eating kale, having massages, eating the root of a tree that only grows in one spot in Africa...]."
First, we don’t have any cures...yet. Even when confronted with what might have helped someone else, we are all different. What works for some doesn’t work for everyone. There are treatments that are advertised as ‘miracle cures’ that rob people of their money and perhaps rob them of their health. Don’t send the person off in search of them.
“Don’t worry, be happy. Be positive.”
This is one that I am guilty of. In my effort to help people cope with macular degeneration, I am sometimes too ‘perky’ or ‘preachy.’ When a person has just been diagnosed or has already lost a significant amount of vision, telling them to be happy and positive may seem insensitive. At least that’s what I’ve been told. They are NOT happy, and they DO worry. A better way to handle this is to say that you are there to support them, all they have to do is ask.
“I really hate that this is happening to you.” and “I know it’s really hard for you now.”
By saying this, you are letting the person know that you acknowledge that this is serious. You are showing sympathy. You may be showing empathy if you’ve gone through tough times, too. There’s never too much of that, in my opinion.
Sometimes the best thing to say is nothing. Hugs go a long way to making a person feel loved and supported. Even sending ‘virtual hugs’ when you can’t deliver them in person are appreciated.
I believe that 99% of the people who encounter someone with a visual impairment mean well. Sometimes we open our mouths before we think. I hope that I’ve helped you understand how people with a diagnosis of macular degeneration interpret what we say.
There’s an acronym I like a lot: THINK
T - is it true; H - is it helpful; I - is it inspiring; N - is it necessary; K - is it kind?
Great advice for those of us who are interacting with those who have macular degeneration.
Did I miss something?
If you have macular degeneration, did I miss something? Please let us know! We are all learning together.
Have you visited our new sister site, ChronicDryEye.net?