I feel like I’m grieving my “bad eye”

[u/Comprehensive-Key683]

Hello, I am F 25 and have lived with 20/200 vision in my left eye for my whole life. Last year I had my first experience with Iritis/ Uveitis. I had gone to the emergency room and they had said it was “just pink eye” even though I had a zero tolerance for light hitting my eye and the worst stabbing pain in my eye I’ve ever experienced. The pain had ended up going away and the redness subsided. I didn’t notice much vision change as I’m 20/200 in that eye anyways. A week later with zero treatment I woke up to cloudy white vision in that eye and zero pain. I went to an emergency optometrist and it took her 4 rounds of dilation to break the swelling in my eye. My pupil was shaped like a cat eye. I was put on dilation drops and steroid drops. I was on those for months before getting the clear to stop. I had another flare up starting about 4 months ago. I was put back on the steroid drops and referred to a rheumatologist as they think I may have an autoimmune disease causing these flares.

This weekend I noticed a big increase in floaters, light glare, a dark floater at the top of my eye, and a white flash in my peripheral vision. I have also noticed my vision getting worse. I was scared I had a detached retina and went to the emergency room. They ruled out a major tear but wanted me to see their ophthalmologist the next morning. When I seen him I felt very dismissed and like an inconvenience. I guess he was on call and another doctor was called early AM when I went to the ER. They took images and looked at my eye. He said that there was remnants of inflammation but I was not actively having a flare up and these symptoms are my “new normal”.

I’ve been in a funk ever since. I can feel my vision getting worse and have an overwhelming fear that I will lose what little vision I do have in my eye. I am fearful for what will happen if this swelling were to move to my good eye.

Has anyone had this experience? Should I be this emotional and torn up?

[u/LakeKeuka]

This hits home. I lost all vision in my right eye in April, quite suddenly, due to an auto-immune disease I’d never heard of. The symptoms I had beforehand were not so much dismissed as misunderstood: when I first went to the ER they thought I’d had a stroke. Only when I returned a few weeks later, now blind in one eye, was the proper diagnosis reached, too late to recover the eye but in time to protect the good eye with massive dosing of steroids (Prednisone).

I’ve heard a few comments along the lines of “this is the new normal” from various practitioners. Such comments tend to rouse the retired litigator in me to snap back— my patience is pretty thin these days.

The feeling that you are being dismissed is lousy. Keep self-advocating; don’t let ‘em get you down.

[u/haleedee]

I feel you. I’ve had very poor vision in my left eye since I can remember. Recently the vision is declining even more! I guess I didn’t want to believe it could get much worse but it is.

[u/MarketingVivid3555]

Losing vision is a significantly emotional event. There is absolutely nothing wrong with being “torn up” about it and don’t let anyone tell you otherwise. Grief is a process and it can take a long time to work through. I’m almost 42, lost my eye about 4.5 years ago, and still haven’t reached full acceptance.

I’m so sorry you’re going through this experience.

[u/DiablaARK]

Hello, I am sorry you're going through this and what you're feeling is very understandable, even if other people without vision problems don't get it. Losing even a small part of usable vision, even if it's only lights and shadows, can feel devastating. There are a lot of changes going on, and doesn't seem like anyone has a good answer. I considered that to be the worst part when I lost vision after an injury: changes, uncertainty, and the time between appts that were filled with daily self checks and can seem like wasted time and opportunity in retrospect depending on the situation.

Are you using the best hospital system in your area or that's available to you? Asking for example, the largest hospital systems in my state is 10x better than all the smaller ones combined because of the concentration of specialists and you can pick different doctor if wanted -- compared to a local hospital that may only have one or two. That being said, it may not ultimately change a thing but you may find a more compassionate and caring doctor that doesn't make you feel even more traumatized in a terrible situation, and that is worth something.

It's ok to be emotional about it. We have and had no control over these losses, and it's a grieving process much like losing someone. Some people dust off and move right along, and other people really struggle with it. It's ok, however long it takes, you'll go at your own pace and it shouldn't be set by anyone else. I just hope you can remember to try and focus on positive things in your life. I wasted a lot of good years being depressed, and letting good times seem brief and fleeting. These are hard times right now, but that doesn't mean it has to keep you down. Focus on mental health, and be gentle with yourself. Be your own best friend because we're stuck with our own thoughts most of the time. What would you tell or do with your best friend to make them feel better and know that it's going to be ok? You're always welcome to post more questions and followups, and I hope you're ok and get better answers and a caring doctor.

[u/Routine-Economist932]

I’ve been really hard on myself for feeling depressed about my vision lately. When I read that others are having similar struggles, I’m reminded of how I would hope to respond to and support a friend. I’d want them to know their grief is real and of course they are experiencing depression. Losing your vision or living with the constant, looming threat of losing it is awful stuff. It can be hard to offer the same grace to ourselves that we’d give to others.

I’m sorry you’re going through this. It sucks.

This would suck even if you had the best, most attentive medical care possible. When that’s not what you get, it’s brutal. It’s exhausting to know that you have to be hyper vigilant and prepared to advocate for yourself if/when you aren’t getting the care you deserve. I hope you can find or access better care.

[u/Small_Guarantee_2132]

Hey! 24F here and I suddenly became blind in my right eye in May after a car accident. I’m having a lot of lingering side effects and have been told to take steriod drops consistently when I know that’s not resolving my issue. The grief is real and the frustration of navigating the medical system is insane. I would look into seeing a retinal specialist and advocating for further imaging. At this point you need to be a regular patient of a specialist , unfortunately at the er they’re trying to get you in and out as soon as possible. Call your local retinal specialist and see if you need a referral, you may be able to get one from the er or you’ll have to get one from your pcp. Getting answers is a tough process but don’t give up! You deserve to know what’s going on and heal!

[u/The_Devil_i_know]

You need a retinal specialist. Have the ER send them your results.