What I Wish My Family and Friends Understood About AMD

By Brown Eyed Girl

3 min read

My life is good. You all know that because you are my family and friends.

You also know there is something wrong with my eyes. But I don’t think most of you quite understand what it is. I would like to explain it to you. So here goes...

It is not just 'old age'

The problem with my eyesight is not just because of "old age." I won’t just eventually "get over it." I have a disease for which there is no cure. It is called age-related macular degeneration (AMD). It is a progressive disease and will probably keep getting worse. Getting a new pair of glasses won’t help me.

The best I can hope for right now is that it doesn’t progress quickly. There are some treatments which may slow it down if my vision deteriorates in the future.

You would be surprised if you saw...

Because I can still do quite a few things, you may think I don’t have much wrong with my vision. You don’t realise that I struggle a lot of the time. I see squiggly lines where there should be straight lines. I see a gray patch in the middle of my vision. Without good lighting, I can’t see very well at all.

The font on all of my devices is enlarged to a really big size. You would be surprised if you saw it. This means I read more slowly, and I often get tired doing it. Good light is needed to read, and for a newspaper or magazine, I also need a magnifier. Even then, a magnifier can’t make wiggly letters look normal — they are just bigger wiggly letters.

Worries about driving and eyesight tests

You may have noticed that I don’t accept invitations to go out in the evening anymore (unless someone comes to pick me up). I’m not being antisocial — I just can’t see well enough to drive in the dark.

You may think that just because I have my license and can drive in the daytime, I can drive anytime. That isn’t the case. I can’t see well enough in the dark, and the glare of headlights makes things worse.

I worry each year about passing my eyesight test for my driver’s license. What will I do if I can’t drive at all? This is a big deal for me.

Trouble recognizing familiar faces

Because my central vision is nearly gone, I can’t recognize faces anymore. Even you, my closest family and friends, are a mystery to me until you speak.

I would really appreciate if you would say your name as you approach me. It would be so much easier. And please approach me from the front so that I have some time to try to work out who you are.

Using bump dots around the house

Have you seen the little bump dots on most of my appliances? That’s so I know which buttons to push. I can feel the dots. Without them, I have no hope of finding the right button.

I learnt that lesson when I put the microwave on for 2 hours instead of 2 minutes. That cup of coffee would have been well and truly done after 2 hours (and so would the microwave). Luckily, I wondered why it was taking so long and turned it off.

Your help might be needed in the future

Do you wonder why I have to go to the retina specialist every 6 months, especially if there’s no treatment for me at the moment? Why don’t I just pop along to the optometrist once a year?

This is because, if my sight deteriorates, it’s important to catch it early. There is now treatment for the advanced form of dry macular degeneration, geographic atrophy (GA), in the form of an injection. There are also injections if my dry AMD turns to wet.

I’m always nervous about these appointments because I’m never certain of the outcome. If my eyes are dilated, or I have an injection, I may not be able to drive myself home. One way or the other, there is the prospect of eye injections in my future. Your help may be needed at that stage!

Increasing understanding

As I said at the beginning, my life is good. I’m happy, and I have no complaints. There is always hope, and I have plenty of that.

But now you understand just a bit more about me, and understanding is always good between family and friends.

Treatment results and side effects can vary from person to person. This treatment information is not meant to replace professional medical advice. Talk to your doctor about what to expect before starting and while taking any treatment.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MacularDegeneration.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Linda Hoopes Moderator
Excellent article, Wendy, about what’s REALLY going on when we “seemingly” are functioning just fine. It takes much more effort to do the ordinary things we use to do quickly and easily and it “appears” we are not struggling. This would be a great article to share with friends & family so they understand. Thanks for articulating our vision challenges so clearly. Linda Hoopes, Team Member
1. Brown Eyed Girl Moderator
 <inline-mention username="Linda Hoopes" user-id="3120797"/> thank you. I was hoping it would be a useful article for our Community members to share if their family or friends didn't really understand their situation. Wendy, Patient Leader.
CommunityMemberf09fbb Member
WOW , so glad for this article . Family & friends just don't understand my fear to loosing my eye sight . Thank you !
1. Brown Eyed Girl Moderator
 <inline-mention username="CommunityMemberf09fbb" user-id="6684164"/> thanks for your positive feedback. I'm pleased the article is useful for you. Best wishes, Wendy, Patient Leader.
Longwood01 Member
It would be nice if this was printable so we could give a copy to the intended recipients.
1. Sharon Moore Moderator
 <inline-mention username="Longwood01" user-id="8652758"/> I don’t see the print icon on my iPhone or iPad. You might share it to facebook and tag friends and family. Warmly, Sharon Moore patient leader 
2. Brown Eyed Girl Moderator
 <inline-mention username="Longwood01" user-id="8652758"/> unfortunately, there is no print icon under this story on my Samsung phone, either. Like you, I can find the print icon on my Windows laptop/desktop. I hope you'll be able to print it from your Windows device. It would be good if we could print from our phones. Wendy, Patient Leader.
Jo Woz Member
Thank you so much for this article. I know my family doesn't really understand what I can see and what I can't. I am printing this article out for them and hopefully they will understand. It's written so well and I am grateful for it.
1. Sharon Moore Moderator
 <inline-mention username="Jo Woz" user-id="9775531"/> We are glad to know you found <inline-mention username="Brown Eyed Girl" user-id="3141081"/> article helpful. You might consider sharing it to your social media account. What type and stage of macular degeneration do you have? Warmly, Sharon Moore, patient leader 
2. Brown Eyed Girl Moderator
 <inline-mention username="Jo Woz" user-id="9775531"/> I'm very pleased to hear that you found my article useful. I was inspired by my mother, who was legally blind, and couldn't even recognize her own daughters' faces. She managed so well that no-one really knew how little she could see. I hope it helps your family understand. Warm wishes, Wendy, Patient Leader.
Jo Woz Member
I have wet MD and have been receiving shots for the last year. Thankfully only in my right eye. The left eye is still dry. I'm at the intermediate level. Thankful for every day that I still have some of my eye sight. Thanks for asking. 
1. Sharon Moore Moderator
 <inline-mention username="Jo Woz" user-id="9775531"/> I hope your injections have slowed the progression. Regards, Sharon Moore patient leader
anne Member
We do what we can. Science can guide us. "In a new analysis of data, researchers at the National Institutes of Health (NIH) have found that taking a daily supplement containing antioxidant vitamins and minerals slows progression of late-stage dry age-related macular degeneration (AMD), potentially helping people with late-stage disease preserve their central vision. Researchers reviewed the original retinal scans of participants in the Age-Related Eye Diseases Studies (AREDS and AREDS2) and found that, for people with late-stage dry AMD, taking the antioxidant supplement slowed expansion of geographic atrophy regions towards the central foveal region of the retina. The study was published in the journal Ophthalmology." <a href='https://www.sciencedaily.com/releases/2024/07/240716151153.htm?utm_source=substack&utm_medium=email' target='_blank' rel='noopener noreferrer ugc'>https://www.sciencedaily.com/releases/2024/07/240716151153.htm?utm_source=substack&utm_medium=email</a>
1. Brown Eyed Girl Moderator
 <inline-mention username="anne" user-id="7027281"/> thank you for sharing this information. It's about time they did some further analysis of the data they collected in the AREDS and AREDS2 investigations. . This is a very interesting study. Best wishes, Wendy, Patient Leader.
CommunityMember454be5 Member
I too have a "grey patch" in the center of my vision in my left eye. I have WET macular degeneration and have been receiving injections for 15 years. Are you sure that you do not have wet AMD?
1. Brown Eyed Girl Moderator
 <inline-mention username="CommunityMember454be5" user-id="6635063"/> as a matter of fact, I do have wet macular degeneration now, although I hadn't been diagnosed when I wrote this story. I was only diagnosed with wet in one eye just a few weeks ago. The other eye has a grey patch but is still dry amd. How often are you having shots and what medication are you on now after 15 years? Wendy, Patient Leader.
CommunityMember9691f0 Member
Thank you for the article. My family is doing the old eye roll whenever I bring up the GA subject. But I am finding that store clerks and strangers are ready to help if I cannot read a sign or I get lost in a big box store. I just say "I have a sight problem could you please read or direct me to ..." and that seems to be the right amount of information to get someone to help. I am encouraged by this simple act of kindness and it makes life just a bit more pleasant. 
1. Brown Eyed Girl Moderator
 <inline-mention username="CommunityMember9691f0" user-id="8675912"/> It's good to hear that you get the help you need from people in stores. I like your idea of giving just enough information about yourself, but not too much, so that people know you need assistance. Although we want to spread the word about macular degeneration, people don't necessarily need details of our full diagnosis in the shopping aisle. Thanks for commenting. Best wishes, Wendy, Patient Leader.