Growing up with congenital cataracts
Posted , 5 users are following.
Hi there,
I'm 22 years old and I was diagnosed with bilateral congenital cataracts when I was a six week old baby. I had the cataracts removed when I was eight and ten weeks old, and I started wearing thick lensed glasses when I was three months old. My parents opted for glasses as they did not want me going through lens procedures every few months and did not want to struggle with contact lenses (after they saw another child screaming with the pain of them). I went though patching to balance my eyes up until I was six.
I've never received support from the blind council here as I was on the list for corrective surgery and I attended mainstream school (despite the protests of the principal). I received support in primary school with PE to improve my coordination and resource teaching to improve my social and visual skills. When I was sixteen, I opted for IOL surgery which corrected my vision significantly. I now only use reading glasses day to day.
Sometimes I feel my condition is isolating. Everyone assumes that it only occurs in elderly people and people look in amazement when I say that I had it, or they need it explained to them. I've never met anybody around my own age who has been through the same experience. I attended the children's eye clinic but a lot of patients attending that were either born with Down's Syndrome or another disability or were up for a procedural check up as they were born premature.
I don't consider myself to be disabled, I prefer the term impaired.
It's hard to explain to people the way that I need to have things bigger for myself, then explaining that no, I'm not blind, no, I'm not low vision as I've had corrective surgery but yes, I am dealing with the side effects of cataracts. It was particularly bad before I had the corrective surgery, as not many teachers and no students at the mainstream schools I attended understood what was different about me besides me wearing glasses. One time I literally had to beg a teacher to change the seating plan so I could sit at the front to see the board properly and stop me getting headaches. It was a battle to get exam supports in secondary school. Thank God my university is a lot more accomodating. I've really struggled socially, not helped by my Asperger's (which I only found out about when I was nineteen) or years of bullying because of my eyesight.
Yes, I know cataracts is a common condition among elderly people. It's surreal at the moment as my aunt is waiting for her cataracts to 'bloom' so she can have surgery (Been there, done that!). I'm also the youngest patient attending the adult eye clinic so anyone who talks to me and my mam think that she has it!
If anyone else out there is around my age, I'd love to hear your stories. I've never found any kind of online support for children who have grown up with cataracts, it's only geared toward elderly adults. If there is a corner of the internet we could congregate, I'd like to contribute.
Thanks for reading x
0 likes, 11 replies
mister84231 orla1997
Edited
hey orla, sorry you had to go through all that bs, I'm 24 and just developed cataracts in both eyes. gonna need surgery in the next few weeks, but still cant decide on what IOL to chose which sacrficises to make and all that.
I cant speak from experience on how life was with that condition, cuz it just came at this age.
what I know is that it sucks to be In this situation and I feel for you
orla1997 mister84231
Posted
Hey there,
I'm sure it's very frustrating for you that you have gotten cataracts so early in adulthood and most likely with no good explanation given as the ageing process hasn't kicked in!
I'm not sure what particular IOL's I got. I had bifocals in my old glasses so maybe they correlated to that? My operations were spaced out two weeks from each other, with bandages on each eye for about a week. Having one eye covered over and the other eye working with my old glasses produced some trippy vision! I also had a unfortunate blip in my recovery, one day my right eye started to water uncontrollably and blinking was painful, went to A & E and turned out some of the physical stitches had started scratching my cornea.
I had almost perfect sight after I got used to the lenses first, but over the next month or so they deteriorated a little, which was to be expected. I was out of school for six weeks at the time and Christmas holidays (pretty good timing). I then got a drastically better prescription for new reading glasses just before Christmas. They literally are now just a standard + 3.00.
Best of luck with the procedures and the road ahead. I can't imagine how you must feel right now. Don't take my experience as a set example though, everyone is different. Fingers crossed everything will be ok without any complications 😃
Sue.An2 orla1997
Edited
Your story is heartbreaking. This could not have been easy to deal with and to have people misunderstand, dismiss or bully is unthinkable. Makes me realize we need to walk a mile in someone else shoes before doing or saying anything.
You are incredibly brave and likely stronger for having struggled.
I wish Danish Viking was still here on the forums as he too is in his 20s and lived with congenital cataracts since birth. He opted for premium lenses an EDOF lens in one eye and a trifocal in the other eye. He waited until lenses had improved to stage they are now and happy and content with the outcome. Maybe he will check in here and see your post and reach out. Always a tremendous support to have that common experience.
I felt blind-sided at 53 to learn I had cataracts as my parents in their late 70s still haven't gad them. Dealing with another eye issue now so I guess sometimes you are never done with vision issues and have to make the most of whatever hand the cards have dealt.
Wish you nothing but the best. You will find many supportive people here.
God bless and stay safe during this pandemic which brings the world together in this shared experience.
Sue.An
orla1997 Sue.An2
Edited
Hi Sue.An,
Yep, people sure are ignorant . I'm definitely glad that there is more awareness nowadays for disabilities and some supports are more publicised but cataracts never seems to come as it just seems like a rite of passage for a certain age group.
Thank you for letting me know about the other user, maybe he'll reply here someday! The biggest problem is, like I said, the council for the blind. My parents are nearing their mid 60's this year so it will be very odd for me if they develop cataracts!
The treat of glacouma and increased pressures has always scared me since I was little. I've made sure in a screen filled world to never use anything without wearing my glasses just in case, don't want to squint too much.
After scouring the internet, I finally found an active forum so yay I guess! We need to all keep safe during this very strange worldwide situation....
Sue.An2 orla1997
Posted
Yes much harder when one doesn't have a visible disability. Often overlooked.
My parents are almost 80 and I am jealous IOL selection s better than when I had the surgery. Just recently diagnosed with Epiretinal Membrane at my last yearly eye exam. Been referred to a retina specialist but it could be months to a year to see one.
Lots of activity on these forums. Hopefully you'll find support here and suggestions to help you in this journey.
Boston_Oat orla1997
Edited
Hi Orla,
Am very sorry to hear about your condition, but it sounds like you've handled it with as much grace as possible over the years. I'm 36 and just had cataract surgery this year for congenital cataracts. My parents discovered I had them when I was about 5. I always had distance vision issues and had problems with things like reading music, viewing projectors from the back of a room, reading menus up on walls, etc. I definitely got teased a lot as a kid because I "couldn't see things", but glasses never helped me as it was cataracts, not a near/farsightedness issue.
Apparently my parents asked my eye doctor when I was 5 what they could do about the cataracts, and their response was "wait for him to grow up and get cataract surgery."
My cataracts got worse last summer and I went back to see my ophthamologist and she confirmed that I'd need to get surgery. I had my first in November right before Thanksgiving and my second in December right before Christmas.
It's been some getting used to now being more glasses dependent. I got monofocal IOL implants as I wasn't a good candidate for multi-focals, so I wear progressive glasses to help with near vision. I've also been trying multi-focal contacts which work pretty well (though at the moment I only have them for one eye as I have a residual astigmatism in my other eye and multifocal toric contacts are fairly rare, but do exist, but my doctor hasn't had me try them yet).
I'd agree that it can feel a bit isolating. Most people are very surprised when they find out I have/had cataracts and surgery. After my surgery, many people were surprised to see me in glasses as they assumed surgery would "fix" everything. Once I explained how with monofocal IOLs you lose most of your near vision (unless you're very lucky), people nod, but I'm not sure they fully get it.
It's still a bit of an adjustment but I'm getting more used to everything. I have a whole thread on my experience if you look through my profile, but glad to discuss here or over PM if it helps to talk to someone with a similar background!
orla1997 Boston_Oat
Posted
Hi Boston Oat,
I'm the exact same with reading sheet music. I play violin and I've always been awkward anytime I was in an ensemble setting. I would need my own stand and enlarged sheet music anytime I would play at school (people must have thought I was a little diva!). I'm currently finishing a music degree and thank God for technology because I need to be able to view some documents and scores just a touch bigger.
I still have some distance vision issues such as seeing people or objects from afar and not being able to focus my near sight without squinting. Still can't read wall menus even with glasses which is still embarrassing when I'm out (WHY are fonts so small on wall menus!!!). I use bifocals lenses in my glasses all my life to deal with both issues, I can't see myself opting for different lenses!
I'm glad that your surgery went well! It's definitely a long time coming for you! I'll check out your thread soon. I think the thing I have really appreciated afterwards from it is all the little things I'm now able to do that I really struggled with beforehand. Such as: watching television/movies without needing glasses, using products in the shower/bath (I really struggled to wash my hair properly before my surgery), being able to read road signs/billboards/price tags. Getting a proper pair of sunglasses rather than using a old spare pair of glasses with tinted lenses was huge for me. And having the choice of frames in a regular opticians (rather than the opticians connected to the children's hospital) was huge for sixteen year old me!
I'd agree with people being still surprised on the reliance on glasses after surgery, but once people saw me with a glasses case instead of my glasses being permanently on my face 24/7, they understood that ok, the operations did something positive. I know if I had it now that I'm in university, there would be less questions as I'm not surrounded by 180 teenaged girls all looking for gossip in secondary school!
tamarinda orla1997
Posted
I totally get this also. I too play violin, but occasionally, and was really miffed when I tried and found my intermediate vision was inadequate to the task. Lean forward, lean back...and in an orchestra, like you said, that is super awkward. So I just switched to bluegrass music where there's no sheet music, hahaha! Problem solved. 😃
As my cataracts got worse, I was actually surprised and curious about how much one could do without seeing clearly. It awakened all my other senses a bit, which was fascinating. I was amazed at how it really is "out of sight, out of mind", and I could be happy not seeing stuff because, well, I didn't know what I was missing. Until I did. That's when I realized my world was getting smaller, shrunken, as I got more and more nearsighted.
That, I think, was part of the adjustment issue I had when I got my first eye operated on. It was my non-dominant eye, and it ended up being a little farsighted. It was like the input from the whole entire spectrum of the universe and all the crystal clarity was too much! Not really an obvious sensory overload: I could handle the brightness and all, and was happy about the clarity. Frankly, if I hadn't had the halos, I would have been ecstatic I think. But on a subtle level, like my unconscious nervous system, I think the sudden opening up contributed to creating this underlying constant anxiety. You know, like when you clasp your hands together with the not typical thumb on top...it feels WEIRD. Except I couldn't "unclasp" my sight.
So I can only imagine the adjustment your brain has had to go through: wowza.
In the end, the only way I could diffuse that anxiety was through daily meditation. My brain was freaking out and so I had to train it to calm down. That worked, and now it's a skill I get to carry forward for other uses too.
tamarinda orla1997
Edited
Hi Orla,
Wow, you have lived a life with challenges and I wonder how you will get to use the super powers you've gained as a result? It sounds like you had a lot of emotional pain living with cataracts and their effects, and many of us here understand that. Thanks for telling us your story.
I am a 51 with a super active inner child. Never had kids and keep living adventures and so basically I never really "grew up," whatever that means. When I got cataracts at 45 I didn't even recognize the symptoms because I wouldn't have imagined anything like that. I denied the need to do anything and put it off til last year. So I totally get the isolation feeling...as I finally thought about surgery, it was lonely realizing that none of my friends were dealing with this. None of my peers understood or could help. Most of my friends are my age or in their 20 and 30s. I had to ask my relatives a generation up, and then start expanding to other retirees I knew, which felt really weird. For them, it was such a non-dramatic thing (by the time you're 70, you're used to having stuff go awry with the body, I guess). I felt like I was being neurotic for thinking and worrying about it so much. They kept saying, "cataract surgery is so easy!" Well it wasn't easy for me and my guess is it's not so minimal for most people...they are just used to shrugging and moving on.
I also got tired of having to explain all the mechanics to people so they understood the tough decision I had to make. Like Boston Oat said, people might just nod but they don't really get it. My good friends really wanted to understand...but it's a lot of information to convey and I had to educate everyone. Now I just tell them..."when you get cataracts, call me and I'll give you the lowdown."
I guess there's something automatic, reflexive, about people...when we see something that doesn't fit a pattern we've seen before, we ask loudly "what? why?" I've gotten it for other things in life, and it does get tiring. For example, I wear five-finger shoes when I go hiking. Practically everyone who sees them says, "Wow, are those comfortable? Do you like them?" As if...as if I would wear shoes I didn't like! It's some automatic thing we do and people just can't help themselves. And yes, it's soooo tiring to receive it all the time.
It also happens with people who live in a country different from where they grew up. "Where are you from?" becomes the first question out of anyone's mouth, without considering how it will feel to the person being asked. There's so much more to a person than one characteristic, and yet our minds are programmed to hone in on anything unusual, and question it.
Sounds like you've been the recipient of that mental reflex for years and years. I'm sorry you have had to deal with that.
So while I know that to you at age 22, I'm kind of an "elderly adult," I can say that you are not alone on this forum. I've enjoyed reading the other answers of younger people. Like Sue An said, one guy in his 40s, Danish Viking, had congenital cataracts his whole life and used glasses and holding things super close to his face in order to get by. Sounds like you had good compensation skills too.
And when I sit back and think of how I couldn't really see, and now I can, even with some side effects, I have to admit that DANG the technology is pretty friggin' amazing and I am super grateful. We are so used to having modern medicine take care of us that we forget that it didn't always used to be that way for us humans. IOLs are imperfect, but they are astounding for what they can do. Aren't we lucky?
Sue.An2 tamarinda
Posted
Really enjoyed reading your perspective - thanks for sharing. So often we get into the technical and mechanics of IOLs that the human part is hidden.
Perhaps the world will become a kinder place after sharing our common pandemic experience. Likely not - but for some we will realize we aren't so different from one another after all have have more than we think in common.
Keep safe.
orla1997 tamarinda
Edited
Hi there, thanks for your lovely post,
I think it has been harder to deal with and process everything now as I get older and mature more, I realise just how bad I've been treated sometimes. I've wanted to be able to talk to people in similar situations for a long time. I've grown over the last three years in the internal dialogue of my thought process. It's had a lot of grief and a lot of acceptance with everything that has happened.
It's very important to have a inner child. I don't want to lose the sense and joy of discovery as I get older. Being able to enjoy and and appreciate little things is very important to me. Yay for your shoes! Being a boring adult is overrated!
I have that same experience that none of my friends around me have been through anything like I have and I always have to talk to older adults about it. It does get on my nerves every now and then, but if people are open to be educated about it, great.
I've been curious about my aunt's situation, anytime she spoke about it to my mam, I'd ask her afterwards what my aunt was saying or thinking about the surgery or the wait for her sight to deteriorate. Obviously she was talking to my mam about it because of the experience my mam and dad have of dealing with my ordeal.
I am super grateful to technology. I've always used a magnifying glass if the print on a book really challenged my sight, but I've never looked back since I started to use a laptop full time for university. I was devastated when my 5 year old laptop decided to fry its motherboard before Christmas. Not being able to change the size of font, the zoom or the mouse pointer on the university computers made me so upset at the time! Technology has allowed me to compensate and manage the little difficulties I have.