The social pain of strabismus
Written on December 4, 2005 – | by Lois (admin)
I’ve not experienced the social pain of strabismus that so many have known. Most of my life, I could control my eye drifts to some degree. But I hear many stories from people who are hurting because they feel so rejected.
I received a comment today from an adult who is having an especially hard time with self esteem and rejection. She had posted to an instructional page in this blog. I’m creating this new post and will move her comment to this post instead. I will let her know where I’ve moved it.
For those who don’t have turned eyes, I encourage you to make a special effort to reach out when you see someone who does. These people are precious. I wish I had better answers of how to help. But I think just knowing you accept them for who they are, being a friend to them, and inviting them into your life and social events, will go a long way.
Comments are welcome.
26 Responses to “The social pain of strabismus”
By robin on Dec 4, 2005 | Reply
hello,
after reading your blog I decided to post. Thank youfor having this bloog. Besides the self esteem issues i have had all my life about my eyes, i was born with strabismus, i have a 10 year old daughter that tolde me yesterday that she is embarrassed to go with me anywhere because of my freakiness and that it scares her. i carry this pain from childhood daily, it has been manageable until she said that to me. i feel like i want to die. even though i am an adult, the pain from childhood comes back flooding and i am so sad. i do not want to be a freak of nature. when she told me thaat, i cried and cried so much! it is not enoughto be a good hearted person i guess. i am so sad right now. i will adapt but this pain is so intense…. damn wahy did i have to be such a freak?
By Lois (admin) on Dec 4, 2005 | Reply
(((((((( Robin ))))))))
Just a cyber hug for you. It wouldn’t be right for me to say I understand, since my strabismus is different. But my heart goes out to you.
One thing I am sure of. You are unique and special. God has a plan just for you, and he understands all you go through.
Yet I know you need support and help from someone with skin on, as they say; someone who has been there and understands what you experience. Hopefully others who have lived through this difficult social pain will comment here also.
Bless you!
Lois
By Will on Dec 5, 2005 | Reply
Well, I can certainly feel for you. I’m a male and have exotropia. I finally got surgery but not til I was 44.
I blame most of the problems on school nurses, pediatricians and even teachers from the 60’s for not really being able to recognize the problem and that there are cures and ways to accept it, etc. Hopefully nowdays, pediatricians and teachers, school nurses, etc. are more apt to understand the problem.
The way I understand it, is that, traditionally, nobody really tested for how well the eyes worked together, the school nurses, etc. only tested for refraction problems, but now, I think they give more emphasis also to how well the eyes work together, stereoscopic vision, etc.
Have you thought about having surgery or vision therapy?
By Candace on Dec 5, 2005 | Reply
I was going to ask you the same thing; have you thought about VT or surgery? Just remember you’re worth it and no one should have to live with something that makes them that self conscious. It would be an investment well worth it, don’t you think?
By Lois (admin) on Dec 7, 2005 | Reply
Robin,
Perhaps this is an opportunity to help your daughter also. She needs to be helped to see that every person is special and no one deserves to be shunned because of something they cannot help. She needs to know how deeply she has hurt you, but that you forgive her and love her unconditionally also. Hopefully when she sees how deeply she has hurt a person she loves so much, she will not want to do that to anyone else. This might even create a special bond between the two of you, making her want to do all she can to shield you from this sort of pain in the future.
Children are all different, and only you know your daughter reacts to things and how best to approach her, but think aboout it. Think of how you can use this for good in her life. I’ll bet by doing so good will come back to you as well.
Bless you,
Lois
By Cristin on Dec 7, 2005 | Reply
Hi Everyone…
I can totally relate to everything everyone has said. I was born with severe esotropia and nothing is more damaging to a child’s self-esteem than the social stigma surrounding strabismus. Kids are especially cruel. I am very lucky…I had two operations as a baby, a third when I was 10, and a fourth when I was 18. Now, my strabismus is barely noticeable, unless I am very tired or looking at something very close. Surgery is inconvenient and can be painful, but so far as I’ve researched it’s relatively low-risk and can be very successful. I’ve had every muscle in both eyes operated on and am told I’ll be in for another operation when I am around 30 or so. I didn’t have as much success with VT, even though patching and other exercises have worked wonders in others. Even the surgery techniques are improving by leaps and bounds. The last surgery I had was done with an “adjustable suture” which involves leaving the sutures loose then manipulating the muscle positions while you’re awake and actually using your eyes. It was the single most painful experience I have ever had in my life, but the results were amazing. Even the doc said the results were better than she expected. I also read (and my ophthalmologist confirmed) that strabismus is genetic and can be passed on to children. Any mothers or fathers out there who have experienced this? I would hate to pass this on to my future children and have them endure the things I did.
By Lois (admin) on Dec 7, 2005 | Reply
Cristin, Thanks for sharing your experience. As for your question about genetics, strabismus does tend to run in families. My father had the same sort of alternating intermittent exotropia that I have. His parents died when he was very young, and he was an only child. So we don’t know if either of his parents had it. I have two grown children and two grandchildren (youngest age 6) and we see no evidence of strabismus in any of them. It could still show up down the road in my family though. *See update below.
I spoke with a gentleman at church tonight who has strabismus (hypertropia). His mother had strabismus also. None of his 3 children have it. He has quite a few grandchildren, and a couple of them have strabismus. The grandchildren have been successfully treated with vision therapy.
We cannot blame ourselves for the things our children inherit from us. We can, however, understand their needs better if we have experienced the same thing. Think what a support we can be to them, perhaps a support we didn’t have ourselves.
*Update January 20, 2006. My 6-year-old grandson was found to have strabismus in an exam at the end of 2005. His dad (my son) will need to be tested also, I don’t think he was ever tested for it.
*Update February 4, 2006: I’ve put my Jan. 20 update about my family inheritance of strabismus into a post. Feel free to comment on strabismus genetics or heredity here.
By Jeff on Dec 20, 2005 | Reply
Robin:
I don’t have this problem, but I realise that the majority of people has something or other that makes them
feel defected. Robin, my heart goes out to you because I can just feel your pain as you write. I am not you
so I dont know exactly how you feel but I want to say three things to you:
1.You must first practise loving yourself. If your 10 year old had strabismus you would still love her.You deserve no
less.
2. Simply tell your daughter that she has hurt you. Trying to emotionally brow beat her now will be counter productive.
Trust me, she will realize herself how she has hurt you as she matures, and will develop into an empathetic
person because of the love that you show her.
3. As cliche as it sounds, Love is the most powerful force.Conquer everything with love. Love yourself first. Then love
your family and others. Even the insensitive ones.You will change the world because of your uniqueness.
By Lisa on Dec 23, 2005 | Reply
Hello. I’ve been meaning to write ever since I first saw your post. I have felt and continue to feel a lot of your pain. I had strabismus all my life up until less than two years ago when I finally had surgery. I am 45 now. Even though the surgery did straighten the eye, in my mind it is still like it always was, so I still hesitate to look at people, etc. I worry constantly that my constant state of tension will cause the eye to turn again.
I have three children. All boys. Thank God all of their eyes are fine. They have been wonderful about my eye. It never bothered them. Mom was Mom, and they didn’t really care what I looked like. However, at some point they probably would have as they got old enough to care what people think. I think your daughter is just going through that stage. And she didn’t realize when she said that to you that it would hurt you so much. I am sure that she loves you very much. You have to consider the source. She is 10 years old. I’m sure she is not the first person to make a nasty comment to you. It is just that this time it came from someone you really care about.
Have you seen a specialist about having this corrected? It is certainly worth checking into.
Please feel free to write* to me if you want. I would like to help if I possibly can.
Lisa
*Lois’ note: If you’d like to correspond with Lisa, send a note to the eyesapart email address at the bottom of this page. State in the email that you would like to correspond with Lisa and I will forward your email to her.
By robin on Dec 24, 2005 | Reply
Hello Everyone,
I want to tell you all how much I appreciate your comments. To sit suffering all these years is tremendous and I am glad I have a venue to vent on. I tell myself that somedays its not so bad, that seeing double, or triple is just when I am tired, but it doesnt escape me when I find my brain shuts off one side of my vision to compensate and i automaticallly shut one eye. I dont know im doing it but others do.
I have told my daughter it hurts that she is bothered by my eye problem. She let it go, apologized and went on, why can’t i?
i am frightened of surgery, not sure i could do it…
Everyone’s postings are so great. Anyone who can understand something I have carried all my life, put it into perspective and give hope, I thank you. I want to wish a most heartfelt holiday wish for you all and blessings into the New Year. I would like to correspond with Lisa.
Thanks so much!
Robin
By Lois (admin) on Dec 24, 2005 | Reply
Robin, It does make a big difference to find others who are coping with similar problems. Helps us know we are not the only one out there. I’ve sent your email address to Lisa.
Blessings,
Lois
By Rev. James Miller on Mar 17, 2006 | Reply
To Robin,I am a 54 yr. old man who has had strabismus in my left eye since the age of about 4 yrs. old. I know how you feel and I feel your pain! You know I am a preacher and it is very hard sometimes knowing that everybody is looking me in the face when I preach, I was on my knees one night crying to God about my eyes and why did he call me to be a mouth piece for Him with eyes like mine? The Spirit of the Lord spoke to me and said…. any one who came to look at my eyes is one who will miss the MESSAGE!!!! I once heard a preacher making fun of another preacher’e and this hurts hearing it from amother man of God.But you know what God has called me to do a job and I must do it! Your daughter is young and probably heard this from one of her friends. Show her the Love of God and one day she will see that she didn’t mean what she said. You & your daughter are in my prayers . May Almighty God’s Son The Lord Jesus give you peace & joy ! The Rev James Miller
By Nicky on Mar 23, 2006 | Reply
Im 22 years old and 2 years ago i was told i have extrophia of the left eye. As a child i had a turning in eye which i had operated on when i was 4 and up until now its been fine. I always used to think i was so lucky to have had it cured and i suppose i was in the fact that it didn;t affect my school life. Too good to be true hey! There isn’t a day that goes by that i don’t think about it. It changed my life completely. Although its not really bad and some people say its not that noticeable i waiting to see what happens with it. My futures permanently on hold. I have no confidence in my future relationships with men i did have a boyfriend but i stay with him because i knew he loved me but that wasn’t really the right reason. Sometimes i think its made me a nicer person , i don’t judge and maybe if this hadn’t occured id be different? Work is hard for me sometimes i work with people my age and am contantly trying to sit in a position that its not noticeable a try not to look in the distance. As everyone else has said you have days when you are up and days where you feel almost suicidal. I think the main thing with me is that the turn isn’t enough for the doctors to do anything right now so im constantly wondering is this it or will it get worse over time. I hope everyone holds on in there you always think its just you when your in a place with straight eyed people but as we can see there are people to talk too XXXX
By larry b on Jul 16, 2006 | Reply
HI MY NAME IS LARRY my strabismus caused me to drop out of school Ijusted felt so bad,I was teased all the time kids would always stare,laugh and make me feel like the joke of the class.It’s hard not to be able to talk to people eye to eye you feel left out of every thing everyone is all ways looking back like is he talking to me I want to talk to people Iwant to have a great job but my confidense is kind of shakey sometimes I dont want to go to my kids school becaues I dont want other kids to tease my kids because of me life has been so dissapointing I just want to get away go to an island and just live this has caused my wife to stop believing in me I know I can be somthing I just hope it is not to late If there is any one out there that can help me in any kind of way please reply
By Lois (admin) on Jul 16, 2006 | Reply
Hi Larry,
My strabismus has affected me in different ways than yours. But I have experienced rejection before also, and I know how hard that can be. Sometimes I felt that no one understood, but then I found someone who did. I shared more about that here:
http://eyesapart.com/2005/07/20/get-there/
It is never too late. Don’t give up. God still believes in you and has a special plan for you. When I realized this in my own life, I found hope and meaning again.
Lois
By larry b on Jul 16, 2006 | Reply
Larry B I would like to hear other peoples stories about what they went threw in life maybe I could help them or they could help me. I just want to meet people like me maybe I wont feel so alone
By Lois (admin) on Jul 16, 2006 | Reply
Here is a link about a Strabismus support group. If you’re interested, you’ll meet lots of people there with similar needs as yours.
http://eyesapart.com/2005/07/14/strabismus-support/
Please do continue to follow the posts you’ve made at Eyes Apart also, though. Probably people who are not in the support group will be replying here from time to time, and most who are in the support group do not keep up with posts here.
By Chris on Aug 2, 2006 | Reply
Dear Larry, Nicky, Cristin, James, et. al.
I have a mild case of exotropia and a deep amblyopia. Half the vision in my right eye is gone, noone knows why and, as a consequence, my right eye sort of flip flops outward in an attempt to use as much of the remaining vision as possible. I too have paid dearly with social exclusion and professional exclusion. The same pattern always emerges. At first, people like me then they just try to ignore me or get rid of me, even fire me. This is an albatross around our necks. I feel for you all and I can understand your pain. What makes it especially difficult is that I can understand why people would exclude us. After all, we are hard to look at. It asks a lot of a person to deal with us.
I too have felt the nights of harrowing pain and exclusion. I understand averting your gaze from others, trying to hide the shameful facts from them, maybe long enough that they will not notice. As a college teacher I am put at a real disadvantage in terms of generating classroom rapport. Sometimes students say, “are you talking to me?” in class, looking behind them as though that’s where I was looking. I cannot blame them, for they are reacting the way anybody would react. There are so many stories like this I could tell. Or the time that my girlfriends niece kept crossing her eyes trying to “imitate” me. Or the time a would be friend in college drew a picture of me and called me “clookee”. Etc, etc, etc.
Nicky, I can relate since my esotropia as a kid turned into exotropia as an adult only after doing the intense amount of reading in college. James, I can relate to you since you have an important job and yet your message gets diluted or distorted because of this. Robin, I can identify with the sense of shame that comes with this, the sense of wanting to just find some leafy hollow and die. But just right now I am somewhat strong about this. And, after 36 years of these eye problems, I can find some solace through anti-anxiety medication and indifference, yeah, a studied indifference to my effects.
There is a favorite poet of mine named Robert Creeley whose eye was plucked out when he was young. He died recently. If you are ever surfing the internet, look him up and maybe listen to one of his audio recordings and remind yourself that you are listening to a man whose eye is missing altogether. You will not hear fear or anxiety in his voice, but a warmth and love that transcends this condition. Go forth with that. I leave you with a poem of mine, written for Creeley, written for Creeley’s Eye and, by extension, all of our eyes.
Creeley’s Eye
O tuphlos homeros!
O Creeley!
I have heard from you
sweet voice of truth
such rich blessings
such vulnerable endurance
such wisdom
that comes from
second sight
to see the world
as it is and as it is not
to see in humanity
its queasiness
with the inner light
its ogling fascination
with the hard truth
both together
at once
and yet
to remain still
to look outward
into their eyes
not with malice
nor fear
and speak
to such fools
naked before their talons
By Steve on Feb 4, 2007 | Reply
I am 23, and my parents noticed that I had extropia when I was very young. They decided to wait until I got older to see how I wanted to handle it, whether with vision therapy or with surgery. I chose to try vision therapy, and I did not have any success with it. About 10 years ago, I decided to have surgery, and since then, I have only had problems when I am really tired. Neither my parents or grandparents had extropia, and I know that two of my great grandparents didn’t have it either. If anyone is contemplating having surgery, I would greatly recommend it. I only had surgery on one eye, and I may eventually need to have one on the other eye, but I know now that if I do need to have surgery, I wouldn’t hesitate to have it done. If anyone is looking for a great doctor in Ohio, Dr. Locastro did my surgery, and he was wonderful!!
By Mary on Apr 4, 2007 | Reply
I had strabismus surgery 3 months ago at the age of 51. My left eye turned outward. Although my ophthalmologist was thrilled with the results immediately following surgery, within 2 months my eye position reverted back to what it was prior to surgery. The term my ophthalmologist used to describe this event was “snap back”. Has anyone else had this happen? If so, did you pursue a second surgery? I had such great hopes going into surgery. To say I am disappointed would be an understatement.
By Leah on Apr 18, 2007 | Reply
Hello
I am having surgery for my adult strabismus in a few weeks. I have finally caved into getting the surgury to re-align my eyes. The reason why I say ‘finally caved into’ is because I really didn’t want to ‘give in’ to the social pressures and the ‘cosmetic’ aspect of this surgery. I didn’t want to be a person who only cared about my looks and admit that strabismus was affecting me in various parts of my life. The main reason why I decided to get this surgery done now is so that I can regain my confidence, be able to one day look someone in the eye with assertiveness and to also help with my every day focusing problems when I’m reading.
I am only in my early 20’s and I have had noticable strabismus since I was 15 years old. I was told I grew up with this condition but it was never worse enough to notice until I was a teen. It never bothered me enough socially, physically, or psychologically until I was graduated from highschool. Once it started getting more bothersome and noticeable (around age 18) I had people close to me tell me some comments they had heard from others about my strabismus. Thats when the strabismus started to affect me socially and psychologically. In highschool I was a much more outgoing person, but when I entered university I suddenly didn’t talk to very many people or try to make new friends. I didn’t want to be judged for having a condition with my eyes. I didn’t want people to stare at me and then give me funny looks so I just tried to slink away from any type of attention. I have not stayed in contact with many of my friends because of my strabismus. The main person who has been my backbone is my boyfriend of 4 years. One of his friends told him not to be with me because I “had a weird eye problem” as his friend called it. I am just so grateful that there are some people in this world who are not judgemental and prejudice.
Although I have strabismus, I have not encountered a problem with landing a job in my career field. I am not sure if I agree with some people’s beliefs that people with strabismus do not get jobs and are paid less. If that was proven to be true, I would be furious! This year I will be graudating from university and will be working at a large company to work on gaining my licence as a finance professional.
I do wish all of those with strabismus a fulfilled life with the many joys that everybody deserves.
Thank you.
By Cathy on May 31, 2007 | Reply
Hi, just passing through doing some research. I wanted just to say that recently I met this man and I think he has Hypertropia. His eyes tilted upwards. At first for few seconds it threw me off. I wanted to tell you, he is the beautiful man I have ever seen. I looked into his eyes and felt safe. I am embarrassed to say he made my heart skip a beat and I felt breathless. Do not let your eyes determine yourself. I thought him to sexy, smart and intelligent. I rarely look at men because they are always “There”. But this one, with Hypertropia is still the most beautiful man I have ever had the pleasure to meet. Beauty is in the “eye” of the beholder, behold your beauty and damn the rest. Thank you and may you be greater than the sum of your parts.
By darren on Jun 6, 2007 | Reply
Hi all,
I wanted to say that that I know exactly how it feels suffering from this affliction. Im 35 and had my second surgery Monday.
I too have encountered to the frustration of people avoiding eye contact when talking to you, the fear of going to parties or attending meetings and worrying will people laugh behind my back?
Being picked on at school and constantly taunted about being “boss eyed” and this leading to an intense lack of confidence made me think of surgery but my fear of needles alway put me off (crazy I know).
The final straw was I spent 4 years going to college after work to obtain my credit management degree whilst being employed by my company. A senior position became available and I applied and made it to the final selection, they gave it to someone else less experianced, less qualified and to be frank no very bright! Of course I was perplexed and pushed my boss “off the record” why I did not get the role? I was shocked to hear that some of the slection panel commented my eye would not be liked by some third party clients and as the role was mostly “client facing” they could not recommend me for the role. Needless to say I was devestated.
So that hard knock of life spurred me on and I got the aurgery done, its hard to guage the results as it only took place Monday but when I go back to work guess what? Im going to tell my company where to stick their job.
Its a cruel world out there but things can be done to improve your stabismus. Go for it !
By Jumbo on Aug 19, 2007 | Reply
hi there, i am from China, and was found to have this congenital defect
when i was still a baby, in my auntie’s words, they just thought I look
weird, and after some observation, they found the problem.
although my parents and my grandparents do not have this condition
but one of my auntie does have. so i think it is really genetic.
because of the economic reasons and my family’s ignorance of this can
be corrected or at least improved. it was left untreated.
in primary school, i have a nick name base on this. but at that time
it did not bother me very much. however as time goes by, i gradually
realize my defect though other people’s stares, laughs or whispers behind my back and
the smirks they wear when they talk with me. they just look at you like
a strange animal in the zoo. pay you so much UNwanted attention.
actually speaking, i don’t care about the vision problems it causes very much.
but the cosmetic, social and psychological problems. i think it looks really weird
. gradually, i become afraid of talking pictures, even to the point, why people invent
camera and video recorder.
you know it really hurts like hell when the people you care about use your defect as
an advantage to humiliate you or make you feel embarrassed. several of my classmates
did just that to me. really miserable hah? even my family members, my father, mother,
brothers all have used this directly or indirectly as advantage to humiliate me.
my father once said, “it is your life, your fate, your destiny, you deserve it.”
i don’t know what drove him to the point to punch me that way. but that is by far
the most terrible moment in my 25 years of life experience.
i even forget how i get through these terrible
moments. but one belief is clear, i have to survive although i don’t know what is the reason.
this physical “twist” leads to a twisted mind. i became so sensitive and paranoid.
more and more reclusive. have few if any close friends, bad communications because of the
lack of eye contacts. less chance of getting promoted.
till now, i still do not have a girl friend. some times the loneliness is really killing me.
make me wonder that, is my existence really meaningful. I know i have my uniqueness but
you know, being unique is not that amazing. and this uniqueness is very frustrating.
I don’t know weather i will be in love with someone in my life, weather there is a girl for me.
but recently i met an amazing girl on the web, we chatted alot, we share so many similarities.
have similar values. and she is good educated, womanly, and most importantly extremely cute.
make me laugh all the time. really thank god for my meeting with her. clearly this kind of
girl is rare, it would be such a pity to let her go, what i want is apparently beyond
“chatship” or friendship. i want her as my girlfriend, spend the rest of my life with her.
but at the same time I think she is too much great for me, especially when i think about my
defect. keep falling in and out of love with her is really a suffering.
but this evening, i told her about my defect, she said something nice, but she was just being nice
to comfort me. i know, she is too much great for me, maybe i should find a girl with kinda
affliction. but i really really fall in love with her.
last June, i got an ads email about a hospital alleged specialized in this kind of surgery.
my old dream of getting it “straight” came back again, and took an operation
in that hospital in last August with my “own” money, but i have to say, got less improvement that i expected.
I even quit my last job for another treatment in Beijing, the doctor said the turn is too slight
for a surgery, wearing glasses will be fine, but which turn out to be not the case.
i still plan to get further treatment. but i also have to work , to support my family, i mean
my parents and my brothers.
ok, enough complains, after all, i am kinda satisfied with what i have, at least i got
educated in university, have a tolerable job as a programmer. and feel lucky to have
this kind of support community on the web. feel free to email me at k37@163.com.
all the best to you all.
By Lois (admin) on Aug 21, 2007 | Reply
Jumbo,
Thanks for writing. It is good that you have been able to achieve an education and have a good job. I know the social part is difficult. A lot of people have similar needs, and you can talk with some of them in the Eyes Apart email group if you wish. As far as finding meaningfulness in all of this, I shared some of the things I have found in this post:
http://eyesapart.com/2005/07/20/get-there/
It sounds like the girl likes you for who you are and she may have been sincere when she said something nice when you told her. Don’t let those feelings that she or anyone else is too great for you keep you from being all you can be and all she needs you to be also.
If you are interested in an email group where others with strabismus discuss these needs, go here to learn more:
http://eyesapart.com/2006/10/25/strabismus-support-group/
Lois
By Jamie on Aug 25, 2007 | Reply
I think we need to raise awareness for strabismus. There’s so many of us who are dying inside so it seems. People have it worse off indeed but it doesnt change the fact that we feel the way we do. Anyone have any ideas???