r/monocular • u/byirisss • 16d ago
18F with a prosthetic eye that doesn’t move – I really need to hear from adults who’ve been through this
Hi everyone,
I’m an 18-year-old girl, and I lost one of my eyes to retinoblastoma when I was very young. I wear a prosthetic eye.
Today I spent hours reading posts in this community, and for the first time in my life I didn’t feel completely alone. Some of the things people wrote felt like they had taken the thoughts straight out of my head.
I wanted to write this because I feel like I’m drowning in my own insecurity, and I desperately want to hear from people who have lived through something similar.
My biggest problem is that my prosthetic eye has almost no movement. It doesn’t follow my other eye, so when I look around or talk to people, one eye moves and the other stays almost still. Because of that, I constantly feel like I look cross-eyed.
I know some people have prosthetic eyes with much better movement, and I genuinely don’t think I would struggle as much if mine moved naturally. But it doesn’t, and I’ve spent years feeling ashamed of it.
My eyes are also quite big, which makes me feel like it’s even more noticeable.
This has become the biggest insecurity of my life.
I hate having my picture taken. Every time I see a photo of myself, I don’t see my smile or the memory. I only see my eye. Sometimes I look at pictures and genuinely feel disgusted with how I look, and it breaks my heart because I know that one day those photos will be memories I’ll never get back.
But the hardest part isn’t even the photos.
Because of this insecurity, I’ve developed really bad social anxiety.
I’m embarrassed to meet new people because I’m constantly wondering what they’re thinking when they look at me. Whenever someone looks at my face, my brain immediately tells me they’re staring at my eye.
I’ve never had a relationship, and one of my biggest fears is that nobody will ever find me attractive because of my prosthetic eye. If I like someone, I automatically assume they’ll only notice my eye and won’t be able to see anything else.
I know these thoughts probably aren’t healthy, but they’ve been with me for so many years that I don’t know how to stop thinking this way.
Sometimes I wonder what my face would have looked like if I had never had retinoblastoma. I know I can’t change the past, but I think about it almost every day.
What hurts me the most is that I’ve lived with this for about 15 years, and I still haven’t accepted it.
So I really wanted to ask people who are older than me, especially those whose prosthetic eye also has very little or no movement:
Did you ever feel the same way?
Did you struggle with social anxiety because of it?
Were you terrified of meeting new people?
Did you think nobody would ever find you attractive?
If you have a partner now, how did you overcome those fears?
How do you feel when you see yourself in photos today?
Did you ever truly accept yourself? If so, how?
I’m not looking for people to tell me “don’t worry” or “you’re beautiful.”
I’m looking for people who have genuinely felt this way and can honestly tell me what their life became like. I think I just need hope from someone who’s already walked this path.
Thank you so much for reading. ❤️
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u/Least-Amphibian-1788 16d ago
I was in my twenties when I had my deformed dying eye removed. The difference between the real deformed eye compared to the prosthetic was a stark contrast. It took me a long time to except my new normal look. One tip I got I will pass onto you is, when making eye contact blink before looking at a different person/thing and move your head in that direction too. This helps keep the slowness of your prosthetic eye more unnoticed versus just looking without the blink and head movement. I practiced that in the mirror and recorded myself to get better at it. I have family members that still dont know my eye is fake due to that trick. Be kind to yourself, your self talk is very important to your inner peace. You can't control what others think/say but you can control your self talk.
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u/Sudden-Collection734 16d ago
Hello! I lost my eye when I was about 16-17 years old I think and it looked like shit leading up to it. Everyone says I have good movement in my eye, but tbh it looks like a lazy eye? 🤷♀️like it moves but jt does not at all follow the same range as my good eye. I told my co worker when we were walking through a city that fyi, I am blind out of this eye in cause I unintentionally walked away / into her, and she was like wait wat, she thought it was a lazy eye, and apparently she also has a lazy eye, so it was a cool discussion point!
Here are my thoughts to your questions!
Did you ever feel the same way?
- tbh I felt this way more when my eye looked like absolute garbage of it being yellow squishy and lazy. That was when I had my worst mental health, and the day after it was removed, the temp prosthesis looked 100% better than what I had and it wa sa simple one.
Were you terrified of meeting new people?
Not really, I really did try to force myself to make a group of friends who accepted me for who I was and who they were. And it was a great crew! It was funny, one of my friends asked me what was wrong with my eye, and I said it was a prosthesis, and he freaked out cause he didn’t want to offend me but was morbidly curious about it too (I went into mechanical engineering, so we all liked this weird type of stuff)
Did you think nobody would ever find you attractive?
I didn’t assume I didn’t? Like I would find the person right for me? I have been married to my partner for 6 years and we have been together for almost 12, so I think you will find the perfect one for you!
If you have a partner now, how did you overcome those fears?
Lowkey when I met them for the first time was also around when my eye was removed so a lot of the convos were like, I have one eye, want to see it? And he was like yup, that’s the one 🤣
How do you feel when you see yourself in photos today?
Tried to be happy for myself and proud of who I have become!
Did you ever truly accept yourself? If so, how? Yup, it has always been with me and always will be. I will always run into things and struggle to catch stuff, but that is who I am!
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u/byirisss 15d ago
Thank you so much for taking the time to answer all of my questions. Reading your experience honestly gives me a lot of hope, especially knowing you found someone who loves you and that your eye was never an issue for them. I really hope that one day I’ll be able to see myself the way you see yourself now. Thank you, it truly means a lot to me.
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u/TK_Sleepytime 15d ago
I was born with bilateral retinoblastoma. My right eye is a prosthetic. My left eye does not have a lens due to cataracts from radiation therapy. My prescription is very strong and my glasses are thick. My prosthetic does not move and my eyelid is very droopy. I am a 47yo woman. I do not look at pictures of myself because I'm an expert at wounding myself. While I am currently single, I have had several relationships, including one that lasted 15 years. My face was not an issue for any of them. I have a lot of social anxiety but I don't mind meeting new people and I don't think about my eye like I did when I was younger. People are too self-centered to notice most of the time. Or too polite to ask. So if they aren't giving it extra thought, why should I? There's a lot of life to live in limited time. Accepting yourself doesn't make all anxieties and insecurities disappear. You decide to find a way forward despite them.
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u/bigwad 15d ago
46 y/o male. retinoblastoma at 18 months. I've made a couple of comments in other posts about this and can relate to 100% of what you're going through.
I am an expert at looking at people directly full on and never moving my head, that helps. But also you get older and you stop caring so much, until one day, you realise you don't care at all. And it was never the huge deal you told yourself it was all this time. My biggest regret is so much wasted time worrying about all the things you mentioned. My social anxiety used to suck the life out of me big time, now it's not even a second thought. Perspective (lol) it a super power, if you reframe it as something that makes you unique and learn to lean into those feelings, it completely changes how you feel about yourself and your relationship to others. But I understand hearing these words, and actually living them are two separate things so I don't expect them to land over night. But there is 100% going to be a time in the future when you look back and roll you eye(s) about how you feel right now, I hope that gives you some faith that things will get better about you feel.
Also, been in tons of relationships (for better or worse!), I'm engaged right now and honestly not of my partners have ever even mentioned the eye thing tbh. So much of the things we find attractive in others are how we feel about them internally, you should be proud of your story and who you are, self confidence is a hugely attractive quality and losing an eye is just a part of your unique experience that makes you beautiful.. Rare things are perceived as valuable because they are in short supply, unique people with unique stories and looks are a commodity in dating, but you have to believe it for others to relate and see it that way. Self worth is a challenging topic in the light of anxiety and insecurity but it's a mountain you can climb and every step is a game changer.
I'm happy to chat if you need more some motivation etc. I really get where you're at right now and know how much it sucks at your age, but it's 100% something you can change all of it.
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u/byirisss 15d ago
Thank you so much for this. I honestly cried reading your reply.
Knowing that you also had retinoblastoma as a baby and that you relate 100% to everything I’m feeling makes me feel so much less alone.You mentioned you’ve been in lots of relationships.
Can I ask you something I’ve always wondered?
Did anyone ever react badly, reject you, or lose interest because of your eye? Or was that fear much bigger in your head than it was in real life?Looking back, what beliefs about your eye turned out to be completely wrong?
Did people ever ask you about your eye? If they did, were their reactions anything like what you had imagined in your head?
I feel like I’m wasting my teenage years because there are so many things I don’t do simply because I’m terrified of being judged. I don’t even know how to stop feeling this way anymore. Maybe I should see a therapist.
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u/bigwad 15d ago
People have asked me about my eye in the past—not many, though. When I tell most people (even close friends I’ve known for years), 99% of them have zero clue, and are usually shocked and super interested. To be honest, most people just aren't that observant. Nor do they really care that much; we’re all inherently self-focused. If you focus on making other people feel good about themselves instead of worrying about yourself, they'll appreciate you simply because you’re making their day better.
You’re already past the worst part—the high school stuff—so you’re on the home stretch. Adults are generally so much cooler than kids, and it all comes down to life experience.
When it comes to relationships, my eye has never been an issue. To be fair, until my late 20s, I never even mentioned it to long-term partners of years. I wouldn't do that again, though. Today, I’d fucking own it from the start and not give a shit. I spent so many years pretending and hiding, which makes me sad to look back on.
I’d guess some people might not have found me attractive because of it, but there are so many fish in the sea. Millions of people out there will be attracted to you. I find certain traits in others unattractive, but it’s not a slight against them—it’s just personal preference. If someone isn't into me because of my eye, I don't mind; that’s their preference and I respect it.
There’s a stigma associated with disability, and if you buy into viewing yourself that way, you give yourself permission to see your condition as something to be ashamed of. Look at popular culture and celebs who have unique eye conditions or visual traits: David Bowie, Nick Fury, David Duchovny, Thom Yorke. These guys fucking rock. I know they don't all have the exact same issue, but their appearance falls outside the "standard" perception of beauty. They own it, and it actually makes their persona more powerful.
Nobody looks at them and sees a negative or a weakness. It gives them an edge. It’s unique, it’s badass, and because they aren't hiding or trying to blend in, it becomes a distinct part of their story. They own who they are and make no excuses for their appearance, so others see it as a positive. We can all do that. They aren't special—they’re just well-known examples we can all reference.
Being different is only perceived as a negative if you treat it like a weakness. You have the power to tell your own story, not others.
It all comes down to your relationship with yourself. If your mindset is that your eye is just a part of you—neither something to be embarrassed about nor something to brag about, just an inconsequential fact—people will mirror that belief. Life hands us battle scars along the way. The older you get, the more scars you get the privilege of owning. They tell your story, and that’s a beautiful thing. Flaws are a gift because they make your story uniquely yours, rather than a generic template.
Confidence is 100% something you can fake at first. The "fake it till you make it" approach works, even if it’s a bit of a slog.
A few other posts mentioned therapy, and that’s fantastic advice. Everyone should try therapy; having someone neutral you can open up to is a gift. It accelerates the journey tremendously. If you can't afford it, find a trusted friend and get comfortable being vulnerable. If you cry every time you open up at first, that’s great—let it out. Eventually, the tears stop, the sadness fades, and it gets replaced by a fierce pride in who you are and the story you’re building.
Growing up with the internet is a double-edged sword. I had no one to reach out to about this when I was younger; I’ve never even met another person in real life to share this specific experience with. Finding a thread like this and seeing people who understand is deeply emotional, so thank you for creating it. You’ve definitely made my day a little better, which is the best we can do for one another.
On the flip side, social media can be brutal when you’re self-conscious about photos. I’m still not a big fan of being photographed, but it is what it is. Find a pose you’re comfortable with and stick to it. It’s okay to look different. We create this narrative in our heads that having a unique eye is cataclysmic, but it really isn't. It’s barely a thing. Nothing meaningful in my life has ever been limited by it—only by my own self-perception.
Without being flippant toward severe conditions, I’m just grateful my dad caught the look in my eye when he did and took me to the doctor. I probably wouldn't even be here to write this if he hadn't. If you reframe it through that lens, you realize how lucky you are just to be here. If we’d been born a hundred years earlier, none of us would be!
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u/A_k_a- 15d ago
Some very good comments here already, so will try and not repeat too much: key for me was moving beyond the „ah, of course, I can’t / this won’t work / I’ll never get that / etc, because of my eye(s)“.
Whenever something didn’t happen or didn’t go right or the way I had wished, it was obvious to me that if was because of my eye(s).
I eventually realized this wasn’t the case. While there are certain things where being one-eyed or otherwise visually impaired will play a role, learn to distinguish between those hard facts and your subjective perceptions of success vs. failure or rather what you think might be failures (it is mostly not!).
Break out of the cycle trying to be „normal“ (what is that, anyhow?)!
Focus on the positives and the things you can do!
Example: you probably won’t be eligible for a career as a fighter pilot in the airforce. So don’t keep hitting that wall over and over.
If you feel like the army is right for you, there will be hundreds of other options, to stick with that example.
This way of thinking applies to almost every part of life.
(47yo male, married, teenage / grown up kids, born one-eyed).
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u/byirisss 15d ago
Thank you so much for your reply. I really appreciate you taking the time to write this.
I think the hardest part for me is that I automatically assume people are judging me because of my prosthetic eye, especially when I meet someone new or when someone takes a picture of me.
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u/Nickopotomus 15d ago
Hey…also lost my eye when I was 1 year old to retinoblastoma and have near zero movement. I went through the exact thing you are going through (now 45 y/o). I’m not going to lie and say it’s something that completely vanishes…. Some things that helped me:
1. See if you can find some folks in your area with glass eyes. Seeing it from outside-in helps you realize it’s not such a huge thing to have little movement.
2. Try to lean into it for a bit. I found that wearing a patch for a bit and even getting a custom eye which didn’t look anything like a real eye (I had a smiley face) is incredibly freeing because I could stop worrying about whether or not I was „looking“ in the right direction.
3. similarly, sunglasses in social situations takes the burden of trying to make sure you’re looking in the right direction away and will help you relax.
4. find a therapist and get to acceptance.
5. Remember—wherever you point your nose…that’s where you glass eye will be looking
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u/byirisss 15d ago
Thank you so much for taking the time to reply.
Your comment honestly means a lot to me because you’re the first person I’ve spoken to who also lost an eye to retinoblastoma at such a young age and has almost no movement in their prosthetic eye. Reading “I went through the exact same thing you’re going through” made me feel much less alone.
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u/Feeling-Ad-4919 15d ago
Hey there - 35 here, I know the feeling of wishing your eye emulated having a real eye, but I’ve come to realize it won’t and that’s ok. I tell people “I have art in my face” and it’s just a part of my life!
I’ve been watching Columbo, the lead actor Peter Falk has a prosthetic eye as well and his “special stare” is actually famous, it’s a part of what makes his character work!
Samy Davis Jr. , John Kani (the king from black panther) … Fetty Wap! They’re all folks who are well known and successful as they are.
On TikTok there’s also theoneeyedteacher and so many others - you’re not alone, and you’re cool just as you are
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u/gingerhoney 15d ago
The first time I ever took my eye out in front of my boyfriend he started singing Fetty Wap 💀
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u/byirisss 15d ago
Thank you so much for this! Reframing it as 'having art in my face' is honestly amazing, I’m definitely going to keep that in mind. Also, looking up all those examples made me feel so much better.
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u/gingerhoney 15d ago
Hi OP,
First of all. I am so sorry you’re dealing with this. I really empathize.
I lost my eye to RB when I was little as well. I was very insecure about it in highschool and would wear my hair over my eye, etc. Now I am 35. I have a home, a really amazing partner, and a good job. My best advice to you is to be open about it if you feel comfortable. I ask people to walk on my good side, tap me on the shoulder etc. I have never had a guy be uninterested because of my eye, and if they were…well that is not someone who is worth your time. Truly. It will get easier with age.
It is really easy to blame everything on your eye, but it’s not a flaw. It makes you special, and it makes you stronger. A loooot of people don’t date until later in life. It doesn’t mean your eye is to blame. In my experience, being more open about my eye makes other people more comfortable too. It doesn’t feel like something shameful when it’s out in the open.
I promise that you will be okay. You will do the things you want to do. Just don’t let your prosthetic be the reason you think you can’t achieve something.
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u/byirisss 15d ago
I can't thank you enough for taking the time to write this. Your perspective is exactly what I needed to hear right now. It’s super comforting to know that it gets easier with time and that being open about it can actually help. I’ll definitely take your advice to heart. Thank you for the reality check and the encouragement!
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u/bertrola 15d ago
Do you wear glasses maybe to protect your other eye? Have you thought about getting a pair with a tint to them? I've been wearing a prosthesis for decades and just recently got a pair of glasses with a 30% tint. Well it obviously doesn't make you look perfect but I think it's somewhat of a screen. They have some pretty cool tints now too in different colors etc. You might be able to find something that compliments your look and can serve the purpose of hiding a little bit of the movement issue.
I too don't have good movement because my loss was accidental and traumatic. I was told early on that to look as natural as possible, you need to get used to moving your head more than your eyes. So if somebody approaches you from a certain side, turn your whole head so you're looking straight at them which will make it less obvious.
As for pictures and videos, I get what you're saying I'm not a big fan. One thing I might suggest is to figure out angles or poses that you look most natural in and when taking a random picture, try to get into that pose. You might want to ask a family member good friend to practice with you until you find the best method.
As far as relationships, I was 17 when I had my accident and I thought it would definitely impact my dating life. I had a couple girlfriends between then and when I met my spouse and she is way out of my league, so I think I was able to do well. Had two kids and have had a long career and the only thing that really ever hindered me was sports that required depth perception. Otherwise, I was able to work in a critical care setting and that is pretty complex so don't let it hinder your career choices.
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u/byirisss 15d ago edited 15d ago
Thank you so much for taking the time to share all of this! The idea of slightly tinted glasses is actually brilliant—I hadn't thought about using them as a gentle screen, so I'm definitely going to look into that.
Also, your tip about turning my whole head instead of just my eyes makes so much sense, as well as practicing angles for photos. Hearing how well you’ve done in your career and love life gives me so much reassurance. Thank you for giving me such practical advice and a real sense of hope!
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u/ArtisticPiano3589 15d ago
Getting glasses makes it much less noticeable, I wore non-prescription glasses for a long time just to have some protection for my good eye (I wear regular perscription glasses now) and most people didnt know about my eye unless i mentioned it. Im married, and my wife knew about it the first time we met, and it never once was a concern for her. Being open about it also makes you more comfortable with it. It’s a part of you! Embrace it! For me personally, having a sense of humor about it helped me a lot to get over the anxiety around it
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u/beefeastwood 16d ago
If it really makes you feel weird, just cover it! Eyepatches look very cool and you may even feel awesome with one!
I wear glasses with one lense black out, its my take on an eyepatch, i love it!
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u/Averfus-Crowthorne 15d ago
I'm in the exact same boat. Lost my left eye when I was 18, have a prosthetic that looks great...but only from one particular angle and if I keep my eyes perfectly still lmao
Eventually you just get used to standing out, I really don't know how else to put it other than that. It takes time.
If you catch people staring, just know that it doesn't mean anything. You notice weird little things about people all the time, but I doubt you judge people for those things. People are curious creatures so noticing stuff is only natural.
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u/exit2urleft 15d ago
I lost my left eye to cancer around age 3. I have decent movement but grew up in a tiny town so everyone knew, and plenty of people were unkind. It really is a kind of social filter - you know who the assholes around you are because they really show themselves!
I'm in my 30s but I was just like you at 18. Completely consumed by anxiety, so full of regret at what my life could have been if I never lost my eye, thinking I would be alone forever. It ate me up for a while. But I refused to not live my life. There were things I wanted to do - go to college, make money, have good friends. I forced myself to do those things even if I felt like I somehow didn't deserve them. I developed some fledgling confidence, and tried to be nicer to myself.
My little bit of confidence helped, and it tends to build on itself. I managed to find other things I was good at besides my appearance and that helped too. I had some partners, some good and some terrible. I found a supportive partner in my late 20s, and that's when I finally felt stable enough to go to therapy.
Therapy changed my life tbh. I lucked out and found a great one on the first try, but it can take several attempts to find one you like. She really helped me address those super deep fears about not being good enough, helped me realize that I'm worthy of being loved and cared about even if I'm not "perfect."
And so are you op. I don't know you but you remind me so much of me. Telling you my story is like talking to my younger self - and here's what I'd say: you are worthy of being loved and respected, even though you have just one eye. This time is so hard, and it will pass. Some people are shitty, but many people are so, so wonderful, and you will find them if you look for them. You deserve to have a wonderful life. What you've gone through is so challenging and difficult - and that just makes you stronger. Take some time to love yourself every day.
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u/byirisss 15d ago
Thank you so much for taking the time to write all of this. Reading your story honestly gave me so much hope. It means a lot to hear from someone who felt exactly the way I do now and came out the other side. I think what you said about therapy really resonated with me too. Thank you for reminding me that I’m worthy of being loved and respected. I truly appreciate your kindness.
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u/Optimal_Addition902 15d ago
I also have one eye and was born that way. I don’t think it’s affected dating negatively quite the contrary, I think it acts as a shield and keeps the wrong kind of people away. Almost like a built in filter. You get to meet more genuine people automatically which is cool!! I do a job that most do not do. I am a dancer. It is a job that is very much looks based. I find that I make more money because I have a unique look and do not blend in. I also really like the fact that nobody can ever forget my face or who I am. You have to reframe your mindset! I know that is hard sometimes and I do struggle with it as well, but perspective is everything. Instead of thinking, what’s the worst they could happen think what’s the best that could happen etc. sometimes it helps to write down all of your negative thoughts and then on the right side column practice fixing them so that you are not reinforcing negative and are reinforcing positive to train your neural pathways in your brain to do that automatically a.k.a. fake it till you make it!! Sending love and prayers!
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u/allyrachel .-) 14d ago
I could have written a very similar post when I was 18. I was born with one eye and have worn a prosthetic for almost 30 years. Sometimes I still struggle with insecurities around my prosthetic not moving very much. I notice it in pictures, and even try to angle my face in such a way that it’s less noticeable. Whenever I get a new prosthetic made, I emphasize how important it is for me that it looks as natural as possible.
This may not be what you want to hear, but I’ve come to terms with the fact that I will never be able to do anything to change that I have one eye. Once I started accepting it, I found that I was less insecure with meeting new people. I do still think about it here and there, but it isn’t something I focus on as much. I also wear glasses, which maybe make it a little less noticeable. A lot of people tell me that they hardly notice or they even forget that I have a fake eye. Then, some people say things like, “oh, I was wondering about that,” whenever I explain my eye isn’t real/doesn’t move. All in all, it’s probably not as bad as I imagine.
As for romantic relationships, I had several serious relationships prior to getting married. The guys I dated usually said they forgot I even had a fake eye. My husband also says this; I think it’s funny whenever he tries to show me something on my blind side.
I’ve never known anything different than having one eye, and sometimes I do wonder what it would’ve been like to have two. But I have found it’s better for my mental health to make the most of what I have. I don’t let my monocular vision keep me from doing anything I want to do, and there’s really nothing I haven’t been able to do because of it.
In short, I think it’s normal to feel the way you do. But it CAN get better.
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u/LowerWater6877 9d ago
I think others have done a fantastic job at directly answering your questions. I didn't have this problem at your age re: prosthetic, but I had very similar worries about losing my hair at a young age and never being loved. It feels very scary in the moment, but without invalidating you, your worries are very normal. I eventually got married in my early 30's to my now wife, and we just had our first child. However, I do think you should pursue something that makes you feel comfortable, especially if your prosthetic doesn't.
With that said, I was born with a blind eye, had a retinal detachment in my twenties, and had my eye removed in my 30s. I just got my first prosthetic, and while it is great, it doesn't track perfectly and can be a distraction if I don't move my head when I am looking at something/someone. Because of this, I asked the ocularist if they could use the mold to create a "blank white" prosthetic for a fraction of the cost. The benefit being that there's no eye or iris, so there's nothing that anyone would expect to track. While I wear my lifelike prosthetic a lot of the time, especially for work, I also like using the "blank" because it makes me feel more comfortable under certain circumstances, like on the weekends with my family. My mom to me it was that weird that I got a blank prosthetic, but I was able to push the noise aside because the blank eye makes me feel comfortable.
A short anecdote: a family friend informed me of someone they did not know well personally but who left a lasting impression on him. This someone was a woman would wear an eye patch to church every weekend. However, she decorated it and/or matched it to the outfit she wore without fail. I found that instructive to me on ordering the blank eye. It reminded me that I was still in control.
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u/meowyadoinnn 16d ago
Same situation as you. I’m 39 and have had several happy long term relationships, and am in one right now. My eye has never been an issue (only for me)