I’m an administrator of a Facebook group I created in May 2016 for those with macular degeneration. Most of the members have age-related macular degeneration (AMD), but there are some who have other forms. Some have other eye-related diseases. But, they all share one thing in common: they are afraid they will lose some or all of their vision.
When I add a new member, I encourage them to tell the group why they wanted to join. In my 3 years of reading introductions, there are many words and phrases I hear over and over. Ever play Mad Libs where you are given a story with sections left out? Then you read the ‘new’ story and everyone roars with laughter! This is the Mad Libs - macular degeneration version, but it’s no laughing matter:
Hi, my name is [proper name]. I am [13 to 95] years old (actual age range from my group). I went to an eye doctor. [Tell us why.] My diagnosis is [tell us what the diagnosis is & the stage you’re in]. I was told [tell us what you were told]. I am feeling [tell us how you are feeling].
Sharing your experience
Let’s fill in the blanks. There are some new members who know what the diagnosis is, what the stage is if applicable, what they can do or not do about it. To be honest, that’s the exception rather than the rule, partly because it's the people who are missing critical information and support who come to groups like mine and this site. For that reason, I’m using the examples of what I commonly hear that represent the confusion and emotional state of people who come our way.
Tell us why you went to the eye doctor
- I thought I just needed new eyeglasses, so I went for an exam.
- I hadn't had an eye exam in 2-10 year(s).
- I went for a routine yearly exam.
- I started seeing spots/wavy lines/flashes/floaters so I called my eye doctor.
- My parents/siblings/grandparents had it. I’m worried I’ll get it.
- I read the symptoms. I think I have it.
Tell us about your diagnosis
- Age-related macular degeneration, but I don’t know the stage.
- Some kind of macular degeneration, but I don’t know anything else.
- I don’t know. I was referred to another doctor.
- Macular pucker/macular hole/retinal detachment. Is that the same as macular degeneration?
- Macular degeneration because I have severe myopia.
- I was told I'm too young for the one that old people get, but they didn't tell me what mine is.
Tell us what you were told about it
- Nothing. I saw some words on the paper I have, but I don't understand them.
- I don’t know what I was told. I was so shocked I couldn't absorb it.
- That there is nothing anyone can do about it.
- To eat leafy green vegetables.
- To take eye vitamins/AREDS/AREDS2/PreserVision.
- To go home and enjoy my vision now before I go blind.
- That I’ll go blind/be legally blind/become visually impaired.
- Let’s wait and see. Come back in 6 months/a year.
- Something about injections into my eyeball! No, not going to do that!
Tell us how you are feeling
- Scared to death
- I don't want to live if I go blind
What do I tell them? What am I telling you?
- If you recognize anything above as being part of your story, please know that many people start their journey that way.
- You are not alone!
- You have come to the right place. We offer support and education. I know that you are overwhelmed right now.
- Let's take this one step at a time.
- Depending on your diagnosis, there's information here to fill in the gaps. We believe that knowledge is power. Once you know the basics, we will help you with what comes next.
- Do you have any burning questions right now? Many of those questions are answered in our Q&A. If not, share them!
- You are on a journey, one many others have traveled before you. There are people who have been where you are who are living GREAT lives! If you want an example of that, go to my friend Sue's posts.
- You don't have to walk alone on this journey - we are here to help you every step of the way.
Want to share your experience with macular degeneration? Click the button below to tell us about your healing diagnosis or when you first discovered something wrong with your vision.
Are you aware of assistive technology for AMD?