David Marshall writes:
Dr. David Guyton at the Wilmer Eye Institue of Johns Hopkins sent this to me along with some other articles, but this one is a very powerful reminder of how crippling strabismus can be to those of us who suffer from it. It is a study conducted by George R Beauchamp, MD, Joost Felius, PhD, David R Stager, Sr, MD,and Cynthia L Beauchamp, MD from the Department of Ophthalmology, University of Texas Southwestern Medical Center (Dr G. Beauchamp, Dr Felius, Dr Stager, Dr C. Beauchamp), and the Retina Foundation of the Southwest (Dr Felius), Dallas, Texas.
This study shows 60% of those studied indicated willingness to trade part of their life expectancy in return for being rid of strabismus and its associated effects. You can find a link here.
It speaks volumes about how debilitating strabismus can be.
This interesting item above is shared by David Marshall (who also provided some input for last week’s post.) The study linked in David’s item is called “The Utility of Strabismus in Adults.” “Utility” is defined in the article as “quality-of-life weight.”
[Update 7/9/2010: When I published this, I never expected people to actually answer the question posed in the title. During the time I was away with illness, I continued to approve comments to the blog. I am surprised and saddened that so many responded, "Yes," to that question. This answer pierces my heart with the struggle that many with turned eyes face every day.
My personal answer to that question is, "No." Of course, I'm 63, so I don't have a huge amount of life left to trade at this point. But, beyond that, I have always been challenged by struggle, and the older I get the more exciting life is in spite of my vision and other health problems. I love to find "work-arounds." If one door closes, I keep opening others until I find one with good things behind it. Keeps me busy, keeps my mind off of my difficulties, and the pay-off is great. Give it a try!]
Photo credit: G & A Scholiers
yes i would. nobody knows how depressing this condition is. For me I feel so inferoir to others and I can’t really defend myself because i cannot make eye contact. It is hard. As far as dating is concerned,it has not really stopped me from being approached, but I don’t even feel confortable in the situation so I don’t even entertain it. Having a companion doesn’t make me feel any better. Nobody understands how hard it is ti live with until they have it.
definitely. easily 5 years. possibly 10 years. strabismus sucks!
you have got to be kidding, your right strabismus sucks but is it worse than losing a child to hunger or war is it worse than being paralysed or blind there are 1000s of people in the world who would trade places with someone with strabismus i worked with what i had and got educated and went to the gym so come on get positive .
Andy I’m not kidding you. Yes people have it worse off but it doesn’t change the facts. Speaking for myself I hate having strabismus with all my might. You say think positive. Some times the bad out weighs the good.
I agree with you Jamie, people are worse off but I even seen two homeless men making fun of me and my friend. I have esotropia, and she has exotropia. I heard them say oh her needs to go a little out and hers needs to go a little in. then laughing. People who usually say there are some worse off don’t have it.
I agree jamie. I saw two homeless men making fun of me and my friend. it is embarrassing
Strabismus is a very depressing condition, I am afraid of social encounters because I can not maintain eye contact with other people and having eye contact is very important in public and social life, If you do not maintain eye contact people will lose interest in you or in what you have to say,because maintaining eye contact is the daily way in which we interact with other people. Social encounters are very hard for me am always avoiding them because it is very sad to hear all the comments other people make about you. ANTOINETTE dont worry I support you 100% because I know how hard it is to live with strabismus.
Depressing is just what it is. Yes I would give a few years to be rid of it, I hate it!!
would give 30 years to be rid of it. Not a day has gone by that I havent thought about it. I would rather be starving in the streets.
Would give 10 years of my life to be able to look someone in the eye and not worry about where my eye is looking, to be able to enjoy a social gathering, to be able to live life like I should:(
I hate this disease!
Yes, maybe 20 yrs. I’ve been living with strabismus (both exo and eso after surgery) for all of my life and I am thankful to God that I am not blind nor that my condition is any worst. But, the worst kind of pain in this world is tha of loneliness. You can only do so much living like this. I am constantly avoiding people and outcasting myself in order to avoid (it) being noticed. Looking yourself in the mirror every day is not a pretty sight, it is depressing and a psychological turmoil.
yes it is hard sometimes but there are at least 2 trials looking to treat amblyopia that show real promise of a possible treatment so my advice is keep the faith and keep checking this site for any new developments.
Hi guys.
I’ve taken some time to read over your comments and they bring back a lot of bad memories.
This comment had the most impact on me: ‘I don’t even feel comfortable in the situation so I don’t even entertain it.’
How true.
I have passed up several thousands of oppurtunities over the years just ‘in case’ someone might say something about my strabismus and make me feel uncomfortable.
The first person kind enough to point out that my eyes were crossed persisted to the point where he caused me to switch schools. Every day (and yes, you guys will know i mean EVERY day)I was concerned with the appearance of my eyes.
This lasted from the age of 13 to 23. There were four surgeries within that time, but i was never satisfied.
Ten years is enough for your mind to believe that you will never be free from the traumatising, psychological grip your strabismus has on you.
Ten years is enough to believe that strabismus is you.
Strabismus defines you.
You are a pair of squint eyes sitting atop your avatar of despair.
Wrong.
It’s your eyeball and a couple of muscles.
Wear it like a scar, and wear it with a smile – and every time someone brings it up, tell them you almost got eaten alive by a bear.
Tell them another thing, too. Tell them you dont give a damn, even if you dont believe it – even if you’re DYING inside with humiliation.
Once you say it enough, you’ll start to believe it yourself.
My full name is on the post, along with my city and age.
My eyes are crossed, I’m skinny, and i don’t like the beatles. If you have a problem with that come see me.
I’ll tell you i don’t give a damn.
I’m not gonna say good luck guys.
Just do it.
John
wow … this is like a therapy session for me. I have had strabismus of some kind all my life which I suspect causes me to be both far-sighted and near-sighted. I am now in my earlier forties. I am strongly left eye dominant and my right eye turns in slightly. Can you guess what it was like for me when I was in Army basic training? My drill sergeants almost gave up on me at the firing range. I’m right-handed but had to fire with my left so I could see through the rear sight and aim at the darn target.
I tell you this strabismus is hard – hard for me to bare that I allow it to consume otherwise good thinking time. I hate all the time I get self-conscious and think about this. Getting self-conscious is one reason why I went online to research this. I hate it!! Think of the energy I could put elsewhere. I would happily shave five years off my life for a better quality of life – normal eyesight and alignment.
What you guys think of my ranting??
Eric I totally understand! I am in my late fourties and was in the Air Force. I must say the Air Force didn’t give me a hard time, even on the firing range.
I have been to many eye doctors hoping to find someone who would help me, most just called it cosmetic and wanted thousands of dollars. I finally find a doctor that my son was referred to, so we could be sure he didn’t have any issues–he doesn’t thank god!
I have been seeing her for about seven years and because of my muscle weakening we discussed surgery–I am going for it! My surgery is this Wednesday:) I know there are a lot of possitive and negative comments, but I have to give it a try.
Have you thought about surgery? Because I keep my head down or tilt my head it is doing a job on my neck and back–no more cosmetic reason.
I hope everything works well!!!
It may not be for everyone, but I trust my surgeon and it is the only thing that I haven’t done.
I hope you find someone that is able to help you! Keep trying and don’t give up!
my son has strabismus…he is 14.
Has anyone here used vision therapy? Was it successful? We saw a doctor today but didn’t get a good “gut feeling.”
Liz, thank you for your question. Please see the ‘Topic Search’ drop-down list near the top of the right sidebar. Scroll down to ‘Strabismus’ then ‘Treatment’ and click ‘Vision Therapy.’ Or you can type ‘vision therapy’ (without the quotes) into the ‘Search Eyes Apart’ area next to the ‘Topic Search.’ You can post further questions about Vision Therapy on one of these posts.
You can also join our Eyes Apart email support group where you can communicate with many others who have strabismus. See info about that at the very top, just above the ‘Search’ areas. Many there have done vision therapy.
Best to you,
Lois
This disease truly and honestly sucks, people that don’t have it CAN NOT FATHOM what we’re going thru, their stupid suggestions of “just put eye drops” or “just close one eye” please, if you have nothing intelligent to say DON’T!!!!
If anyone wants a shoulder/ear to talk about this you’re more than welcome to write me at davtpt@hotmail.com
Dave
Some of you have mentioned surgery, the result of my surgery has cost me to “see” double 24/7, I wish I never under went the surgery…
Now my eye “appears” straight to everyone else, but I am living a nightmare.
Hey i know what you mean. i was born with exotropia. It’s like living in a nightmare that never ends.
I can say my life sucks, its been like that for 20 years.
Im shy, no self confidence or self esteem.
I ignore people sometimes since i cant have eye contact especially when im looking to my right side.
i have prescription glasses, and had surgery as well.
But i still feel the same. Why me??? im so desperated.
Excuse my bad language and bad english but im not very fluent.
Im frustrated with my life. Im kind of a loner. Its so hard having to deal with strabismus because eye contact is ONE OF THE MOST IMPORTANT THINGS YOU NEED IN THIS LIFE.
I’d like to meet more people with strabismus and make friends. myspace.com/odraudeduardo
Went to Yale 3 weeks ago, Dr. suggestes prisms again,I’ve been thru several pair already which all they do is make you see blurry, they at yale loved my home-made glasses/patch configuration, $1 pair of sunglasses with black tape on the right lens, popped out the lens on the left side, comfortable eye to elminate diplopia, I’m seeking a solid contact lens, my first surgery in 2006 resulted in my double vision ( thanks doc ). But life goes on, I’m starting to do more Latin gigs on my trumpet, people constantly tell me I’m missing a lens & I thank them for their concerns, sometimes I ask them to keep an eye on the floor to spot it
Que sera sera, it is what it is, don’t let your eyes stop you from living, there are too many ignorant people out there, ignore them or tell them ” I see stupid people”. Keep in touch…. Dave.
Hi. I am so sorry all of you have had such rough experiences coping with your strabismus. I wouldn’t trade a day of my life. I’ve had three surgeries and still my right eye turns in a fair degree.
Sure, I’d rather not have it, but to be honest, on a day-to-day basis, I rarely even think about my strabismus.
It actually never even occurred to me that other people would mind it until one person said something obnoxious. But then my friends said they are not bothered by it, and I stopped worrying about it. People seem pretty comfortable around me. I don’t know – maybe it doesn’t faze them because it doesn’t faze me. I agree with the fellow above – don’t let your eyes stop you from living. If people say unkind things, it says more about them than about you. People truly worth hanging around with won’t judge you by a physical imperfection.
Ellen
Easily. Without a doubt I would do it.
I can’t get a job because I can’t look any potential employers in the eye in interviews. Which in turn leads them to believe I don’t want the job or am not motivated or friendly enough.
Whenever I meet new people (Men especially) I can’t maintain eye contact at all. I have no confidence whatsoever.
It has taken over my entire life. I hate having my picture taken, I have some talent as an actress and am already working professionally but I know that my career is limited because I do not have straight eyes, so I won’t be hired for major jobs.
To know that the one thing in my life I can do really well, the pinnacle of that career is unreachable for me due to something most people with straight eyes take for granted is debilitating beyond belief.
So yes, I’d trade life expectancy for a chance at feeling normal.
Oh and I’m sure anyone with strabismus reading this knows full well the pain of the double take people do when they believe you are looking past them while you are talking to them…
Or the one where you are talking to someone among a group of people and they say “who are you talking to” ’cause they can’t tell which eye you use to look at them with.
Or… the one where you suddenly realise your lazy eye is staring at someone… that one is embarrassing as hell.
I’m seriously thinking of wearing a pirate patch and saying it’s for fashion XD
Hi. I know very well the experience of people glancing over their shoulder while talking to me, or a group of kids not knowing which one I’m addressing. Yes somehow, these experiences don’t bring me pain or embarrassment. They are simply a part of who I am, and I’m okay with that particular imperfection. When people get to know me, they stop even noticing the wandering eye.
Of course I’m way self-conscious about other parts of my looks…I don’t mean to be insensitive to anyone’s discomfort with their strabismus. And I’m fortunate in that my career is not affected by it.
I do believe that we all have something to offer the world, and that a smile and friendly conversation can go a long way to offset the wandering eye when talking to someone.
Ellen
Ok, so here is my question. I had surgery 11 years ago, and unfortunately, it appears the effects of the surgery have worn off and I am back to where I was pre surgery. Before going in for another surgery, which will probably last only a few years, what about prosthetic contact lenses? It seems like this problem might be one that could be masked? Anyone ever check into it?
Mike
Your comments are truly sad. I am wondering how many of you suffering with strabismus have tried vision therapy. There are options other than surgery.
Gee Eric, your story sure sounds a lot like mine except I’m considerable older than you. I’m sure that doesn’t give you much hope. Sorry. I’ve had seven operations. The last two were to correct the mistake of the previous one. All were unsuccessful. I spend so much time thinking about whether someone notices that my eyes aren’t perfectly aligned that it consumes me. And yes, I would give up some sight and some years of life just to feel and look normal.
yeah mike you a correct, i think prosthetic lense is the answer! it seems a small price to pay for your life back, im putting in for one very soon, and il let you know how it is going when i have it.
Brian, how are you buddy? Please give me information on getting one of those prostetic or occult lens. I still have this double vision and after four years of wearing glasses wirh black tape on the right lens I think it’s time to upgrade….Has anyone ever worn those CVS/WALGREENS patches… they’re HORRIBLE… ( hot,itchy, leave you a rash )…. So brian, please shoot me that info… davtpt@hotmail.com To the rest of you, anyone wants to chat, e-mail me or facebook me….
Thanks…..
I would trade decades to have straight eyes. Most days Id rather not be alive due to it anyway. Everytime I look at someone I can only think about my eyes. I fear looking at people from certain angles that I know my strabimus is worse at. I hate not looking normal in pictures and being able to capture all my memories without worry. This problem has got me severely depressed and exhausted. I have had two surgeries at age 4 and 22. I am not 23 and want another surgery though I fear it will only turn my esotropia into esotropia. No one knows the constant struggle I face everyday. It is all I see upon looking in the mirror. I feel incredibly inferior to all others and I start to get annoyed by people and the things they are self conscious about because those things can be changed…like weight or a big nose…etc. anyway my heart goes out to all of you…I am praying for some miraculous treatment option to give us all perfect alignment with no health hazards.
Some may not have seen the update that I posted recently to my original post at the top of this thread, so I share it here:
[Update 7/9/2010: When I published this, I never expected people to actually answer the question posed in the title. During the time I was away with illness, I continued to approve comments to the blog. I am surprised and saddened that so many responded, "Yes," to that question. This answer pierces my heart with the struggle that many with turned eyes face every day.
My personal answer to that question is, "No." Of course, I'm 63, so I don't have a huge amount of life left to trade at this point. But, beyond that, I have always been challenged by struggle, and the older I get the more exciting life is in spite of my vision and other health problems. I love to find "work-arounds." If one door closes, I keep opening others until I find one with good things behind it. Keeps me busy, keeps my mind off of my difficulties, and the pay-off is great. Give it a try!]
Yes. Probably 5/6. It is really hard to live with strabismus even if you have surgery you can still sometimes see it and the scars are still there. It really sucks having to go to school every day and have people take 1 look at you and make fun of you just because you don’t have perfect eyes even though you tried to have them corrected. They look at you and don’t understand what you have had to go through. 4 surgeries, eye doctors appointments every month, they just don’t understand how painful it is to look in a mirror and go “wow. I’m so hideous because my eyes aren’t perfect.” I try so hard to cover it up but people still are jerks and don’t understand. They said it would get better in high school but people are still jerks. Why can’t people mature and just grow up! Some people are different than others!
Hi everyone,
Wow, I am so glad I found this forum! I’m 34 and have had infancy strabismus all my life. I received two surgeries before the age of two, however, had to endure ridicule from kids in school throughout my school years. Mostly my left eye would completely turned in and up, as my right eye was the dominent one. When I switched my vision to using the left eye, the right eye would turn in. When I was twelve years of age, my grandmother offered to pay for eye therapy excercises. I went for two years… didn’t work one bit and was a complete waste of my grandmother’s money.
I was always under the impression that another surgery would be considered cosmetic as my parents were no help to me at all growing up. That was until I had my own insurance and decided to persue the idea of surgery. Insurance pays so don’t be afraid it’s considered cosmetic, it’s not! So, when I was 22, I had two more surgeries which made my eyes look almost perfectly straight. The two side effects of it was that my vision in my right eye began deteriorating so I was prescribed glasses for distance, otherwise I would rely on my left eye to see, which made my right eye still slighty turn in. My left eye is very sensitive to light and appears red at times however. Now only twelve years later, my left eye has been wondering outward for the past couple of years and is only getting more noticable to me, so here I am again debating yet another surgery.
My friends and family claim they don’t notice it but I don’t believe them. My conscience gets the best of me thanks to all the torement I endured as child in school and being turned down for jobs as a young adult. I am in the business of dealing with high profile clients and the last thing I need is for them to notice it.
Anyhow, I have my first appointment with an Optomologist in Bethlehem, PA. His name is Dr. Kitei. I hope he’s as good if not better than the last doctor that perfomed my surgeries. Good luck to everyone and keep strong!
I completely understand what everyone on this forum means. What kind of a life would I be taking years off of anyway? I have had 2 surgeries and as long as I don’t look to the left, I hear they appear straight. But you can never put back together your shattered view of yourself. It’s truly depressing to walk by someone’s wedding pictures and know you will never have that. Although I’m glad I found this forum. It’s the first time I have felt like I wasn’t alone.
Yaa… I feel exactly like everyone else. I have a bit of exotropia in my left eye when I’m staring out at distant things. It has lowered my self confidence. I dont want to initiate conversations or even eye contact.
And you are right, NO ONE else knows what it’s like to feel this way if they have not experienced it first hand. I wish more people were educated about anomolies like this. To them, you are cross-eyed and inferior… ABNORMAL.
I’m going in for my 4th surgery because my eye has began to drift again. I am 24 years old. Like, this is not what I want to be worrying about. I have school, work, a social life… So, yes… I’d trade in a portion of my life to “be normal” again.. lol. Well, I don’t even know what normal is… Seeing as I’ve had this since I was born. It would be nice to be on the other side of things for once.
@Darlene @Dee
Yes, the tormenting is the worst part. I can remember being teased all throughout middle school and high school. It definitely takes a toll on your well being, because you are waiting on that one loud mouth out of the group to point out your one flaw. Ughhh! It happened during childhood and it still happens as an adult from time to time. I’m just waiting on the next technological advance to save me, heh!
It’s just like, there are so many other advancements coming along–with cancers, AIDS, growing old… Why is there no easy fix for my minor problem…