For those that are monocular recently or from early on and went to therapy...

If you went to a therapist, what did they tell you?

It's obvious what pain or grief one would be going through...

I'm just curious so that I don't waste my time.

Because I don't know what could possibly make me feel better about losing vision in an eye.

(Aside from being completely blind of which I know I am simply not strong enough for)

Hello! I (24F) was a 27 weeker with ROP and other premie health conditions. I’ve had retinal detachments on both eyes and fortunately my right eye was able to be reattached and for the most part I have okay vision. I am monocular with no light perception on my left eye. Recently I found out that my refraction on the good eye went from -7.25 to -10. I’m beginning to get worried that one day I’ll lose my sight completely. I try my hardest to not let my ROP define me, I worry that due to the high myopia increase, I may become blind eventually.. Anyone with monocular vision struggle with high myopia? How do you handle it?

What are some complications of ROP that has followed you into adulthood. I’d like to be prepared or try to prevent any issues from occurring if I can.

I’d love to hear about anyone’s personal experiences with ROP and how that’s impacted your life as an adulthood.

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. ❤️

As the title says.

I has been 3 months since I lost sight in my right eye. I’ve had it much easier than many here. Though the loss was rapid there was no accident, bad pain, or visible injury. What’s been surprisingly hard is adjusting to wearing glasses for the first time.

I’m 69 and since I was young my left eye was near-sighted and the right was far-sighted. And I never needed glasses, through college, law school, and a long legal career. But now I have lost my “distance” eye and had to get glasses with a progressive lens for my remaining eye. Holy cow, this is difficult! The intermediate range — arm’s length or that first step — is really tricky. Not sure what I am asking for here, other than assurance it will get better with time and practice. Thanks for reading.

I visited an ophthalmologist, not an ocularist. He said my blind eye has a slight bulge and hasn't been eviscerated. Should I see an ocularist to see if a scleral shell is still possible, or should I consider evisceration? Has anyone with a slightly bulging eye successfully worn a scleral shell?

I visited an ophthalmologist, not an ocularist. He said my blind eye has a slight bulge (hasn't been eviscerated). Has anyone with a slightly bulging eye successfully worn a scleral shell?

Hi i'm 19M , In recent times i have been diagnosed with retinal vasculitis treating it with ATT (empirical diagnosis from several tests) maybe autoimmune cause too but doctors need to rule out infectious etiologies first for safer treatment process. due to this condition i find it really really difficult to read , see faces and the vision in that eye is feeling like everything i see through that is not real , like things feel bent and i cant even read text in phone due to macular involvement , i have a PRP coming up next week . Also im a CS major i feel like things are just over for me like life just become total upside down getting this at this age feels so overwhelming I have no one to share my feelings . what im going through each and every day feels like a bad day for me thinking of old days makes it much worser . Feels like there is no Hope for me to recover from this condition.

Also I need tips to live with what is left please help guys .

27F
I have monocular vision. Only one eye works at a time and my brain favors the right one.

I have really bad back issues and posture problems. I think my brain has shifted my sense of center based off the vision from my right eye. I’m in pain all the time. I have degenerative disc disease in my back and it’s physically noticeable the my right side is favored. I feel like i don’t have a sense of my left side? If that makes sense?

Who can I see to help with this? I’m worried there’s something more serious that needs to be addressed? I’m not sure why my eyes ended up this way. I was told as a child i had a really high fever but wasn’t taken to get medical care. I was also told i was dropped a few times as a baby. My eyes started crossing at the age of 1-2. Had surgery then the left eye went outwards. Had surgery again at 16 just for appearance purposes (i was very self conscious, it was very noticeable).

I've only had a right eye since i was 3 months old, I feel like working out at the gym uses extra brainpower where i have to gaslight myself while lifting coz like if I'm doing incline dumbell press for example I'm doing them assymetric. I've kinda gotten used to hit but it still feels weird when i use my eyes to maintain a balance. Not sure how to describe it. Thoughts?

I lost sight in my right eye in April due to Giant Cell Arteritis. Arteries on the left side of my head were also affected. Since then I have had my left eye field of vision tested several times. Yesterday’s test showed marked improvement, indicating that the Prednisone (steroid) is doing its job.

Hola a todos. Quería compartir mi historia porque me gustaría saber si alguien ha pasado por algo similar.

Tengo 26 años y perdí casi toda la visión de mi ojo izquierdo debido a una toxoplasmosis ocular. Todo comenzó con inflamación y una disminución progresiva de la visión. A pesar del tratamiento, el daño fue permanente y ahora prácticamente no veo con ese ojo.

Lo que más me cuesta no es solo la pérdida de visión, sino el miedo constante. Mi ojo derecho tiene visión 20/20 según el oftalmólogo, pero a veces veo un flotador transparente cuando miro el cielo y, en ocasiones, siento que la vista se desenfoca por un momento y vuelve a la normalidad al parpadear. Eso me genera mucha ansiedad y siempre pienso que la toxoplasmosis podría afectar también mi ojo sano.

Quisiera saber si alguien aquí perdió la visión de un ojo por toxoplasmosis. ¿Cómo es su vida ahora? ¿Han tenido reactivaciones? ¿Cómo manejan el miedo a perder visión en el otro ojo? ¿Con el tiempo lograron recuperar la tranquilidad?

Agradecería mucho leer sus experiencias y cualquier consejo. Me ayudaría saber que no estoy sola.

Anything helps...

How do you adjust and move forward?

I'm not sure how to better describe it than this. Some times my good eye just doesn't feel synced up with my brain. Sometimes it feels uncomfortable, sometimes it's hard to focus on things, it just feels out of sorts.

Hi all! I’m not sure if this post is allowed, but I’m a 17-year-old who is blind in her left eye looking to start a nonprofit called The Ocular Outreach Initiative. The goal would be to help support and empower individuals with prosthetic eyes through accessible resources (such as care packages), community connections, and advocacy (@theocularoutreachinitiative on Instagram). I’m looking for volunteers who could help with things like social media, graphic design, finance, fundraising ideas, website editing, outreach, operations, or writing. This is a volunteer opportunity, and I’m happy to answer any questions about the mission. Thank you for reading! As an attachment is required for me to post, an AMA is attatched.

I lost my right eye in April due to Giant Cell Arteritis and have recently been making a more concerted effort to regain my confidence behind the wheel. My two-cents on this topic follow.

I’m a 69 year-old guy who enjoys driving, whether it’s my wife’s Volvo or my BMW sedan. On trips I do most of the driving, mostly because I’d rather drive than be a passenger.

Loss of an eye, which happened suddenly, scared me away from driving at first but now I am much more comfortable.

As many have noted here, it’s important to turn your head in order to adjust for the lost field of vision. However, what I have discovered is that over the years I have developed the habit of looking over my right shoulder unnecessarily when I should instead rely on the right outside mirror, as well as the inside mirror. Now that I have lost my right eye, it’s a matter of turning slightly to the right to be sure I am fully using the mirrors. Looking over my right shoulder is neither necessary nor practical in most situations. Anyway, that’s my experience so far.

So my current prosthetic is about 5 years old now and my socket has changed shape. I am hoping to get pregnant within the next year or so. My ask is that should I wait to get a new eye now or wait? My ask is that has anyone experienced if pregnancy caused drastic changes to your socket? And I would like to wait till it’s over esp cause they are really expensive and not covered by insurance. But also a new eye prosthetic would be nice cause my eye socket has changed shape since I initially got it and have been getting extra goopy cause of it. What has been everyone’s experiences?

Hey guys 30M here, I just found this reddit and after reading through most of it felt like a lot of what I was dealing with these last 3 years wasn’t just a me thing so it kinda made me feel a bit better to know the everyday struggles weren’t just my battles (sorry). ended up dealing with central retinal vein occlusion like, 4 months after moving to Austin, tx and it kinda sucked for the first year. I skateboarded most of my life and the depth perception issues just made something I love 10x harder so I quit for a while and focused on another passion which is fighting game tournaments and thankfully that doesn’t require both haha. Still get on my board every now and again but it’s still just a bummer. Overall, I’m super self conscious about how it likes to drift and most days I feel like the motherfucker wants to drift more but just keep it pushing guys. I was already chopped so I just accepted another challenge 🤣🤣

Today I bought a book I’ve wanted to read for a long time.
It wasn’t cheap (about ¥1,700), and I almost decided not to buy it.
But after losing vision in my right eye, I realized I also need to practice reading with one eye.
Since my job involves reading a lot of documents, I thought this book could help me rebuild that confidence.
A few months ago, I probably would have given up.
Today, I decided to try instead.
Maybe this is another small step toward getting my old life back.

Hey there fellow one eye friends, I had my eye removed Friday and I’m just wondering what your experience was with recovery? I feel like my surgeon really down played how painful the process is. It has been incredibly painful. I was given a prescription for Percocet and that still didn’t take away all the pain, and now I’m out. After surgery, I was told I could drive tomorrow (Saturday) if I felt up to it. Obviously I haven’t left my house since then. Do you feel the same? Or am I just having bad luck? Thanks in advance (:

I had an enucleation in January of this year and things have been going pretty well. I had my new prosthetic eye fitted, it feels like a good fit. However, I do have an issue at night where I'm guessing my eyelid is not fulling closing because I get pretty bad dry (prosthetic) eye. I feel like when I'm lying on my back, the prosthetic protrudes slightly more from my socket. The dry eye is just uncomfortable and it happens pretty quickly after I fall asleep. My tears also dry out and they can feel like daggers especially if they get under my eyelid. If it wasn't an every night thing, it wouldn't be a big deal.

So my question is, does this happen to you?

-If it does, is this something I should go back to the ocularist about? The ocularist didn't want to shave down the prosthetic too much more because of volume loss.

-OR is this something I should manage with eye gels and ointments?

Any advice is welcome. Thank you.

Hey everyone, for context I was born with Microphthalmia. I only have vision in 1 eye. Has anyone who was born with only 1 eye tried a GLP1 had no eye side effects? I feel so alone. Two years ago I tried Wegovy and it started giving me vision issues. I was extremely sensitive to light and had blurry vision. It was very scary, especially only having vision in one eye. I went to the eye doctor and they confirmed nothing was permanently damaged, but I still stopped taking the medication immediately. Since then I have had multiple doctors recommend me to try a GLP1 and each time I have to tell them what happened to me on Wegovy. Each doctor has told me that they have never seen anyone had this vision side effect on the medication. I am wondering if it is because I only have one eye. I also recently started taking an anxiety medication and the first few weeks on it my eye was extremely sensitive to light. I don’t know why medications affect my eyes so much and wonder if it has to do with only having one. Just looking for someone who can relate :(

Today was another good day.
I took a relaxing drive to Higashi Chaya District in Kanazawa, Japan. I walked slowly through the beautiful old streets, enjoyed the atmosphere, and took my time instead of rushing.
I even skipped some things I wanted to do because I thought, “I can always come back another day.” That felt like progress to me.
On the way home, I bought a book to practice reading with one eye and some ice cream for my family. It wasn’t an exciting adventure like yesterday’s trip to Eiheiji Temple, but it reminded me that enjoying ordinary days is also an important part of recovery.
A few months ago, I thought my life was over because of losing vision in one eye.
Now I’m beginning to think differently.
Little by little, I’m getting my confidence back.
Thank you again to everyone here for your encouragement. Your comments have helped me more than you know.

I'm waiting for mine.

Still fresh in losing vision in my left eye.

Right now I'm still depressed and in disbelief.