Blind and Visually Impaired Community
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Appointment anxiety (self.Blind)
submitted by [deleted]
[deleted]
Agreeable_Morning_60 6 points 1y ago
I work as an ophthalmology technician, and I am legally blind. For me, when patients like you and me come through (90% of my patients) I just want to help and relate as best I can. A lot of people who work in this field have some kind of connection to it. So trust me when I say that almost everyone working in the field has some form of empathy for vision loss. I have RP as well, and trust me I have been so low lately dealing with my progression and now Functional Neurological Disorder that I question my drive. But everyday I go to work I am reminded that I can at least provide a calm environment for my patients so that they know I understand them and I will not look over anything, because I KNOW that even the smallest things could change your life drastically.
HeyT00ts11 1 points 1y ago
You sound amazing. What would you recommend for OP? What have you observed others do that's been helpful?
Agreeable_Morning_60 1 points 1y ago
Honesty, being upfront with wirh your concerns and anxiety is one of the best ways for us to treat you. A lot of people come in and are like “yeah… my eyes have been okay, nothing major”. Then i get the hunch they arent telling whole truth. So I do a little extra testing, and sure enough, they have symptoms of AMD or NPDR or POAG. What helps most for me is when the patient is upfront with what they are experiencing. Doesnt matter how crazy it sounds. We had a patient come in and say he has been seeing birds flying down and attacking him. Guess what, he wasnt crazy, it wasnt a psychological disorder. He had severe glaucoma, and what he was seeing was hallucinations caused by vision loss. He had no idea he had glaucoma or anything wrong with his vision.
lil-alfalfa-sprout 6 points 1y ago
>I should be thankful for the eyesight I have, I'm still pretty independent.
Your amount of eyesight does not have to correlate to your level of independence. <3
Your amount of eyesight does not have to correlate to your level of independence. <3
okraSmuggler 4 points 1y ago
I just don't see the reason to go to the doctors anymore for my condition. All they will say is that yes my vision is worse than last year and no, there's still nothing they can do about it. And then I get to deal with my already photophobic eyes being dilated the rest of the day.
So yeah, I don't really go to the doc anymore
So yeah, I don't really go to the doc anymore
whiskeyandtaxes 2 points 1y ago
I totally get this. Every six months I go in, move from one room to another for tests, then get told, yes, my AMD is progressing, yes, there's nothing they can do and, yes, come back in six months so I can go through it again.
WanderVoids 2 points 1y ago
I went hospital today after 3 years and they were useless, went to a different hospital to usual due to covid.
So I've got to go back to my normal one for more tests in about 6 months. I just cannot be arsed anymore.
I'm currently dealing with the dilated pupils! Doesn't help I walked out and the sun was glaring
So I've got to go back to my normal one for more tests in about 6 months. I just cannot be arsed anymore.
I'm currently dealing with the dilated pupils! Doesn't help I walked out and the sun was glaring
okraSmuggler 2 points 1y ago
Dilated eyes suck. I have found Cocoon sunglasses help a lot. They look like old man sunglasses (they fit over my normal glasses and wrap around the sides of my head), but oh well.
I think the only time I'll go is when I find that I can't work anymore so I can apply for disability.
I think the only time I'll go is when I find that I can't work anymore so I can apply for disability.
codeplaysleep 3 points 1y ago
For me it's a mix. On one hand, I kind of get excited, because it's a chance to see great people (the doctors/staff) that I've spent decades forming relationships with. On the other hand, there's always a bit of nervousness that they're going to notice some change that indicates impending doom for what's left of my vision.
squeakywilliams 3 points 1y ago
I've had that anxiety most of my adult life. I typically don't go alone, but this last exam my spouse wasn't able to go back with me. I flat out told the doctor I'm sorry if I'm slow or get to rambling it's because I'm anxious. He was super understanding and made it easier. Eyesight is a precious thing.
WanderVoids 3 points 1y ago
My SO has said he'd go in with me next time but I just get so embarrassed / stressed, idk the best way to describe it
I'm so private when it comes to my eyesight issues. I hide it from a lot of people in my life. I know I won't be able to forever
I'm so private when it comes to my eyesight issues. I hide it from a lot of people in my life. I know I won't be able to forever
squeakywilliams 2 points 1y ago
I totally get being private about it. My family doesn't understand my health, they try but I don't share as much as I used to. Let your SO be there for you and know what's going on. They can advocate for you and absorb info you might miss. I hate that my health and sight aren't the best. But having them there reminds me I'm not facing anything alone.
snimminycricket 2 points 1y ago
I second this. If your SO has offered to go with you, I think you should bring him. He wants to be there for you, and it sounds like you need someone to be there for you. I also have RP and I don't go to my appointments alone - my spouse usually goes with me, or one time my sister did, and one time my mom and my spouse were there <3 when it was the big scary attach-things-to-my-eyeballs-to-read-my-retinas test. It makes a huge difference to have the support, and like the other commenter said, the person you bring with you can absorb info you might miss. You might miss things because of your heightened emotional state, or your SO might just have different insights and can ask questions you wouldn't have thought to ask. I also think that, although it's scary to let someone into a part of your life you've been so private about, it is likely to strengthen your bond and bring you closer together.
WanderVoids 7 points 1y ago
Thank you so much <3 I think it may be for the best.
I do so much alone, I just struggle to be open about how I'm feeling and coping without being a blubbering mess haha
I do so much alone, I just struggle to be open about how I'm feeling and coping without being a blubbering mess haha
Remarkable-Plastic-8 2 points 1y ago
I have bilateral limbal stem cell defiency and have lost a bit of my vision but still independent as well. Even when my eyes were stable, going in for monthly check ups were nerve racking because it could go south so fast. Not to mention the months it took just to diagnosed. I hate doctors appointments now and probably always will.
[deleted] [OP] 1 points 1y ago
[removed]
JaymeJammer 1 points 1y ago
Hey there, I have a different specific condition, but similar in the inevitable loss of my vision. I feel the exact same way, though I admit I'm a bit jealous, as I don't have a partner. But when I did, I also did everything I could to avoid being an imposition to them.
Independence is easier with sight, no doubt, but I know lots of completely blind folks who insist that life without sight ain't that bad either. Everyone has to make up their own minds on that one, I suppose.
But in any case, I feel ya. Enjoy what you can while you can would be my hope. Good luck!
Independence is easier with sight, no doubt, but I know lots of completely blind folks who insist that life without sight ain't that bad either. Everyone has to make up their own minds on that one, I suppose.
But in any case, I feel ya. Enjoy what you can while you can would be my hope. Good luck!
queengemini 1 points 1y ago
I am not blind but I just want to say that what you’re feeling is perfectly normal and healthy. If you can , you should try to get counseling to help with your anxieties so that it won’t grow into medical avoidance. Besides that , if you use tiktok, YouTube shorts , Instagram etc you may want to follow ASFvision or Lucy Edwards; both are blind ( not entirely sure by how much but well beyond the legal threshold) and live independent fulfilled lives. Perhaps you could get some life hacks from their videos or just see another person with a similar condition and get more reassurance that if it all comes to that it IS possible to still be independent and follow most dreams.
niamhweking 1 points 1y ago
It completely makes sense so dont beat yourself up over it.
I know you have had RP your whole life but it is still an overwhelming thing to be dealing with.
I know you have had RP your whole life but it is still an overwhelming thing to be dealing with.
WanderVoids 1 points 1y ago
I'm supeeeerr short sighted too
So it's like I got the full whammy of eyesight issues haha. Thank you
So it's like I got the full whammy of eyesight issues haha. Thank you
complex-blobfish -2 points 1y ago
thanks for indirectly calling my life bleak.
being afraid of your changing future is fine, but there is no need to shit on those of us who are already blind.
i skateboard, i speak 4 languages and 3 sign languages including deaf-blind sign. i go kickboxing, i don't have a carer, i cook, i am the guardian to a 6 year old also blind kid. her life isn't bleak either, she does karate.
yes we struggle with some things, but so does everyone for many different reasons.
that said. feeling anxious about eye appointments is normal especially when there is a progression going on.
just don't say it like that again please dude.
being afraid of your changing future is fine, but there is no need to shit on those of us who are already blind.
i skateboard, i speak 4 languages and 3 sign languages including deaf-blind sign. i go kickboxing, i don't have a carer, i cook, i am the guardian to a 6 year old also blind kid. her life isn't bleak either, she does karate.
yes we struggle with some things, but so does everyone for many different reasons.
that said. feeling anxious about eye appointments is normal especially when there is a progression going on.
just don't say it like that again please dude.
zomgperry 3 points 1y ago
I wouldn’t take it so personally. It’s hard to face the possibility of having to learn basic life skills from scratch. I just lost most of my vision and while I know I’ll adjust eventually, it’s hard not to feel shitty about it. That doesn’t mean I think blind people have shitty lives, but there is a grieving period that happens when you lose your vision. I agree the OP was worded poorly, but no one in there right mind would say you have a bleak like. But you have also had time to learn skills some of us have not had yet.
Unrelated, but what resources do you use for language learning? I was learning Spanish before my recent vision loss and I would like to continue.
Unrelated, but what resources do you use for language learning? I was learning Spanish before my recent vision loss and I would like to continue.
complex-blobfish 1 points 1y ago
study the alphabet and the accent first. once you have got that under your belt it won't matter if the screen reader says it differently. that way you can access news and other writing printed in that language.
for Latin and Swahili i used this method.
for the sign languages i had to have an actual person there so i could touch the signs, then i confirmed with their sight that i was signing correctly (as a sighted person would do too)
duolingo and other similar apps read the words aloud. though you have to play with the settings for it to read them aloud all the time. they are spoken how they should be pronounced.
if you know braille it is easier as you can get a braille labeller and label everything in English and whatever language you are learning. though this only woks with languages that use the Latin alphabet and you lose the accents on letters but that is fine in my experience.
put baby programmes on in the language you are learning and put the audio description on in English to give context. then toddler programmes, then kids, then life like dramas.
for Latin and Swahili i used this method.
for the sign languages i had to have an actual person there so i could touch the signs, then i confirmed with their sight that i was signing correctly (as a sighted person would do too)
duolingo and other similar apps read the words aloud. though you have to play with the settings for it to read them aloud all the time. they are spoken how they should be pronounced.
if you know braille it is easier as you can get a braille labeller and label everything in English and whatever language you are learning. though this only woks with languages that use the Latin alphabet and you lose the accents on letters but that is fine in my experience.
put baby programmes on in the language you are learning and put the audio description on in English to give context. then toddler programmes, then kids, then life like dramas.
WanderVoids 2 points 1y ago
I'd just like to comment and say it wasn't my intention to indirectly shit on anybody
I came out of an appointment feeling frantic and needed to vent somewhere.
On reflection I could have worded it better, so apologies.
I came out of an appointment feeling frantic and needed to vent somewhere.
On reflection I could have worded it better, so apologies.
Criptedinyourcloset 1 points 1y ago
Agree with us. I’ll give them the benefit of the doubt though. Sometimes for sighted people they can be hard and sometimes they just don’t know their options. OP, there’s another commentor above that said that your eyesight does not have to correlate to your independence. And it doesn’t. I agree with everything the comments said above me. I live a very happy and fulfilling life. I ski, play go ball, get around on my own, make my own food, I can basically do everything independently just as a sighted person can. The only things I can’t do or drive. Not everything requires vision and you can completely work without it. Please look into your options somewhere on the Internet and go to your local blind resource center if there is one. They can help you.
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