Confessions of a Macular Degeneration Diagnosis: A Devastating Delivery

By Andrea Junge

3 min read

“There’s nothing more we can do for you; you’re going to eventually go blind.” - My Diagnosing Retina Specialist

Inhale. Exhale. Repeat.

**Insert long, dramatic pause and slow eye blinks here as my retina specialist, Dr. Nonchalant which I’ll call him, impatiently handed me a piece of paper, breaking the silence: “Get as skinny as you can, take these vitamins, and come back to see us when you have more chances with your vision,” he continued.

A crippling prognosis

Needless to say, I was at a complete loss for words upon hearing this crippling prognosis. What I came to realize much, later on, was that it wasn’t just the actual diagnosis that was so debilitating, but it was also the method in which it was delivered.

Dear friends reading this article, I have to pause here for a moment to make it clear that there is so.much.wrong. with the way my RS delivered such catastrophic, life-altering news.

A devastating delivery

What Dr. Nonchalant bluntly vomited at me with indifference, coupled with what I just didn’t know as a macular degeneration novice, was enough to shove me nose-diving into a long, dark spell of extreme anxiety and depression.

I hope that this is not the way in which your diagnosis was handed to you; however, I’ve been in this game long enough to know that this type of treatment is surprisingly common in the low vision world.

Intense feelings upon diagnosis

I immediately plummeted into a terrifying cycle of intense feelings that are often accompanied by the delivery of such devastating news: Fear, anger, sadness, confusion, worry, anxiety, shame...

It was a cocktail of emotions that when mixed together, are labeled as grief.

I was so caught off guard by what this doctor was saying that I couldn’t even wrap my brain around what was happening. I was being told I was going blind...

But if I’m being completely honest, I was really hung up on the ‘get as skinny as you can’ part.

Feeling terrified

I tried to focus.

Huh? When I have more vision loss? Did he just... call me fat? What in the world? Wait... I’m going to eventually go blind?

Breathe, Andrea… Inhale. Exhale. Repeat.

It was one of those isolating moments where everything else in the entire universe just *snap* disappeared around me.

Even though my eyes were dilated, the room became pitch black. Everything got quiet - the kind of quiet that’s so empty it’s deafening. My ears started to pulse rhythmically. You know what I’m talking about, that terrifying feeling when everything around you just... Stops.

I felt like I was all alone floating around in outer space; I was an astronaut. The only thing I could hear at that moment was my own racing heartbeat behind the very intentional breaths I was forcing in and out of my lungs.

Inhale again. Exhale again. Repeat.

Feeling broken

I couldn’t tell how my heart was going to stop, I just knew that it was going to one way or another. Either it was going to beat at light-year speed until it decided to finally explode, or it would just give up entirely and simply draw a line in the proverbial sand, refusing to continue on from there... Arms crossed, pouty faced and all. Humph!

I mean, how does one recover from hearing news like that? And with such little explanation and zero empathy to boot...

A diagnosis of Myopic Macular Degeneration

I was just twenty-six years old when I was diagnosed with failing retinas. Macular degeneration is a diagnosis most often given to people who are over the age of 65. I was an anomaly of the worst kind. Wonderful.

My mom was with me that day. She accompanies me to many of my RS appointments, even now when I’m almost forty years old. She had a zillion questions for my doctor that day, but whatever it was that she asked him is a fuzzy blur to me - I didn’t hear anything after the initial devastating blow.

I sat in that cold chair in my retina specialist’s office unable to speak, tears uncontrollably rolling down my face. One hand was cradling my tummy which wasn’t fat, Dr. Nonchalant, but was holding my first unborn son inside. The other hand had a tear-filled tissue woven through its fingers out of nervousness.

One single moment can change our entire lives

Can we just pause for a moment here together, friends, and just breathe? Do you remember the very moment you were diagnosed? Can we sit here a hot minute and just acknowledge how absolutely transformational this moment in time was for each of us?

Wow, how enormous one single moment in time can be!

What was your diagnosis experience like?

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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mrsbedbug Member
Andrea, this is terrible! I'm so sorry. The delivery of my diagnosis was similar. A year and a half ago, I went to see the covering Ophtho on a Saturday morning (that alone should have given me pause!) to be told that "it is serious" "you have macular degeneration, it used to be incurable but now there is treatment that might help". I knew what MD was since I had befriended an older lady with AMD when I was in my twenties, used to help her with groceries and have lunch together. She was blind. I had always known my vision was my "achilles heel" since my high myopia had definitely felt a little bit like a disability my whole life. I would fear losing my glasses if out in the wind or water since I knew that without them I would be completely helpless. As a result I was useless in sports. Later in life I had discovered running which did not require judging distances or hand eye coordination which I lacked! Maybe I am kind of glad I didn't know about my high risk for macular degeneration back then. It was hard to deal with when it happened, but worrying about it when I was 22 would definitely not have been good. Anyway, the first RS I saw was not at all supportive of my emotional process and I was very very anxious as a result. Thankfully I have found a new RS that I trust and that has made ALL the difference! When I shared my fear of going blind, his response was "with close follow up, this can be managed". This simple statement made all the difference to me. Your story reminds me how powerful words are. I hope you have been able to find physicians and others to support you in a more positive way. 
1. Brown Eyed Girl Moderator
 <inline-mention username="mrsbedbug" user-id="3117799"/> your comment shows how important it is to find the right doctor - one who is supportive. You reminded me of my optometrist who found my dry macular degeneration in my first eye. The next year she said, just before the examination, "The worst thing that could possibly happen now, would be if we find it in the other eye." And then she did. I was devastated. She shouldn't have used those words. I went away thinking that the worst thing ever had happened, which wasn't true. Things could have been a lot worse. I found a good, supportive retinal specialist the next week. Warm wishes to you, Wendy, Advocate.
catlvr07 Member
Has anyone gone to a low vision clinic and was it helpful? 
1. Beverly Dame Moderator
 I have just finished my second four-week training session with a low-vision occupational therapist. She offered a wide range of helps around the house and I learned about how to use my peripheral vision in place of my central vision (that's the part damaged by macular degeneration). Ins. Check with your Retina Specialist for a recommendation and review Richard Halberg's article. And it is covered by Medicare! Beverly Dame, Advocate.
2. Brown Eyed Girl Moderator
 <inline-mention username="Beverly Dame" user-id="3111567"/> it sounds as though the low-vision occupational therapist was a good help to you. That's very encouraging to hear. Are you getting any better at using your peripheral vision with practice? Wendy, Advocate.
catlvr07 Member
Where can I find Richard Halberg's article?
1. Sharon Moore Moderator
 <inline-mention username="catlvr07" user-id="4690890"/> here is a link to Richard’s article <a href='https://maculardegeneration.net/living/vision-rehab-specialist-visit' target='_blank'>https://maculardegeneration.net/living/vision-rehab-specialist-visit</a> I hope you find the article helpful. Best wishes, Sharon Moore advocate the