Bring your karma
Join the waitlist today
HUMBLECAT.ORG

Blind and Visually Impaired Community

Full History - 2018 - 02 - 14 - ID#7xkpd0
13
Might be going blind - diagnosis on Friday. What would have liked to hear or know on you diagnosis day? (self.Blind)
submitted by rdmhat
Obviously not everyone here was an adult when they were diagnosed, and not everyone got a chance to know ahead of time that such news might be coming.

I had one specialist (endocrinologist) say she strongly suspected damage to my eyes and referred me out and hopefully I'll have some answers on Friday.

If you were in a similar boat, what would you have wanted to hear ahead of time? What thoughts might be helpful for me to keep in mind?

Also... Do I wear makeup or is that just going to get in the way (I've never had eye issues before...)

This would be my Fourth majoro diagnosis so I think I'm more ready than most people, but it's always good to hear from those who have gone before. :)
AllHarlowsEve 13 points 5y ago
While you have vision, start learning basic Braille. A couple years before I went blind I had the opportunity, but turned it down. I regret it immensely.

Also, if you do lose vision, don't be too proud to use a cane. I know several people who have high amounts of vision but total blindness in some areas that have had major injuries, like several broken bones, concussions, etc because they were too proud to use their cane.

On the flipside of that, take everything you're taught as one tool. As you learn and grow more in terms of blindness skills, you will note that some things, like using pins on your clothes, may not be helpful, but others, like using sock clips to keep pairs together, may be. Some people love certain screen readers and only use that one, like me with VoiceOver on my Mac, while other people are comfortable using many platforms.

Don't be afraid to ask questions, since we all had to learn once.

Also, you will grieve for your vision loss, you will go through the stages of grief, and that is completely normal and fine. It's up to you to work through it, maybe with a professional, and come out to acceptance on the other side. You can also go backwards from acceptance, and that's fine too.

Agencies for the blind exist and can be helpful, but you are not obligated to take anything they offer you, and you can say no to items, help in certain areas, or even people. That's one that isn't talked about much.
KillerLag 5 points 5y ago
Guessing from your post history (and the fact it was an endocrinologist), I would guess the doctor is having an eye specialist check for diabetic retinopathy (just a guess, it could be something unrelated).

It is best not to wear make up, especially if they have to put drops into your eyes. Some of it can run out, and some of those drops make you tear up as well.

Depending on the cause of vision loss, there may be some treatments for them. But before jumping right to the treatments, take the time to research some of the side effects. You can also always ask for a second opinion, if you aren't confident in that eye doctor.

If you do have the start of some vision loss, definitely connect to your local rehabilitation agency. Getting training earlier is helpful, even if it turns out you don't need it.
rdmhat [OP] 2 points 5y ago
Good guess but, no, I have no diabetes complications. But when one has one autoimmune disease, you're more likely to get another (and my family collects them). This is an unrelated autoimmune disease, but was caught in a standard blood test.

Thanks for the tip about make up! I'll obviously know for sure on Friday but I think it looks like my best case scenario is that I'm stuck with the damage that I've got (which is far from blind, but some visual impairments). It's mild, so I'd be quite pleased if that's the news I get. And I've started dating a guy who doesn't seem to care at all and very kindly reads menus for me and things like that. Honestly, if anyone has to have a visual impairment, it's lucky it's me and not someone in a more difficult situation. :)
KillerLag 1 points 5y ago
The other reason I guessed diabetic retinopathy is because that is one of the top four causes of vision loss worldwide. ;)

Best of luck tomorrow!!
Ramildo 5 points 5y ago
The way I lost my sight was extremely odd. I was born with glaucoma and lost vision in my left eye very early, and since the pressure in my right eye was hard to control I knew that eventually I would go fully blind, however when it started to finally happen nobody was prepared for it, and that includes 3 glaucoma specialists who thought I was lying when I complained about loss of contrast perception, because $1 among ophthalmologists that glaucoma affects the peripheral vision first, and since my pressure was fine, my field of view remained unchanged, and both my cornea and lens were clear the only possible explanation was that I was lying. This lasted until a year later a cataract was diagnosed and immediately blamed for the loss of contrast, and I was advised to do nothing about it until I was completely blind. Another year later my pressure started to increase, so I had surgery to implant a glaucoma valve which was supposed to free me from medication, though 3 months after the surgery my pressure was already back to its previous levels. Eventually my contrast perception got so bad that I was having trouble walking on the street , so I decided to have the cataract surgery, which left me seeing everything extremely blurry and didn't restore my contrast perception, leading one of the doctors to finally conclude that it was probably due to optic nerve damage. Following this I had another surgery to control the pressure because my mother believed that it was still possible to do something about my vision and it actually brought the pressure down but it was already too late.

In my case I wish doctors had been quicker to figure out that my optic nerve was getting damaged and attempted the surgeries as early as possible to avoid blindness, but unfortunately due to the aforementioned misconception coupled with their inability to actually observe the back of my eyes since my pupils don't dilate I ended up going blind.
KillerLag 3 points 5y ago
That paper you linked was published in 1984! And they still teach that glaucoma causes peripheral vision loss first (although we quickly learned in the field that it is highly variable).

imau91 3 points 5y ago
I was diagnosed with Retinitis Pigmentosa at age 12, and was told I'm going blind, albeit slowly. Since then (26 y/o now), I've lost an additional 80% of my sight and am legally blind with a FOV of only 5 degrees, though I can still read and use the phone/computer provided there's good contrast and font size.

I think for me it was a bit easier because I've grown up knowing that my sight is slowly escaping me, but it doesn't mean that I wasn't scared or that I don't still mourn it sometimes. Now that I've entered the stage where I'm having trouble being independent and also losing the ability to read/watch movies etc. it hurts even more.

As other commenters mentioned, you will grieve and experience loss, anger, depression and the lot, and please do allow yourself to feel those things without anu self-judgment. They're normal and human. Still, at the end of the day it's important to remember that you are *not* your eyes, your body is not you, and the loss of vision doesn't define you as a person. You are only as 'disabled' as you allow yourself to be. With new technologies, help from other people and some self-compassion, you will learn how to make peace with this new chapter in your life. <3
This nonprofit website is run by volunteers.
Please contribute if you can. Thank you!
Our mission is to provide everyone with access to large-
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
©2023 HumbleCat Inc   •   HumbleCat is a 501(c)3 nonprofit based in Michigan, USA.