Hey, I have just joined this forum. My name is Justin, Im 18 years old and I basically can say I SUFFER with my amblyopia and ptosis. I was reading other peoples posts and I notice how much people think alike when they have these problems with there eyes. I have had 2-3 surgeries when I was about 1-3 years old and recently had 3 more done ( eye muscle surgery X2), to lift the lid up, and had the same eye moved over a tiny bit. They both affect my right eye. My eye has caused nothing but anger, depression, me talking to other people, times feeling I dont want to live anymore...this is why i said SUFFER before. Now I have told all this to many other people and they said not to dwell over it and move on... well I have...until someone says "hey,why is the side of your eyelid down?" or "hey whats wrong with your eye". After I hear that I just get so nervous and I feel like I wish I was just home sleeping or being by myself.. these problems annoy me so much And I can't take it any longer....Im typing all this so maybe someone out there can help me get treatment for it or know of a study that can help save my eyelid and make it normal like everyone elses
Hi there, I don't have the eye lid difficulty you have but have had a very pronounced squint in my right eye since I was 11, I am now 37, I had the the surgery to correct the squint 9 days ago. So far i'm pleased. I'm really sorry the surgery has not worked out for you I can't really advise on what your further options are surgery wise. I also know nothing about the eye lid condition.
What I can hopefully do is give some advise on coping with a squint and it's impact, having had one for 25 years. I won't bore you with the details as to why I didn't have the surgery before now but double vision was the main concern.
Your absolutely right people tell you to just accept it so you eventually do and then someone makes some thoughtless remark or you see the confusion in their eyes as to who you are speaking to and it all comes back to you. I have a squint.
Generally as you approach adulthood, as you are now, people are a bit less likely to make deliberate cruel remarks. However one tenchnique I have developed is to take control over my eye problem and get in there first with any jokes. For example I have to do quite a bit of group work and presentations -nightmare for eye contact - so I will sometimes make a statement a long the lines of 'you may have noticed my eye squints - so I might have to point to the person i'm speaking to until I get to know your names. So you'll know i'm not being rude if I point'. I 'll usually say it in a humorous way it gives a clear message to people. Your doing a few things here you are being assertive and saying look I know my eye squints so what? I'm not going to allow it to embarrass me or stop me doing what I want, so if you think it is a weakness you can exploit , then forget it,I am to confident. Finally, importantly you are showing a sense of humour and by putting it out there into the open you are freeing people from their own embarrassement as to how they should respond.
Sometimes people make comments out of curiosity and don't mean to cause offence. Unless a comment is obviously designed to upset and or belittle you I generally found the best response was to take an educative approach and just explain in a matter of fact way what the problem is.
If someone is being deliberately cruel then try and think of some killer comeback lines in response. I know they say turn the other cheek but, unless you think the person may get physical, then have some fun thinking up a witty response to put the person firmly in their place.
Here are some i have developed over the years
Have you ever thought of wearing an eye patch? ( I kid you not i've had that a few times)
No, have you ever thought of wearing a complete face mask?
In response to 'cocke eye' and other such comments
' Do you know, I could get a simple operation to fix my eye problem but you would require years of plastic surgery'.
Really (mock horror) I have a squint? oh my god thanks for pointing it out.
I know it's amazing what an eye can do to avoid looking at a face like yours?
Again, to each is there own but when someone comes out with something like cocke eye to me their fair game! Of course, self preservation has to come first so proceed with caution if you think the person may get physical!
By doing the above you are again taking control, using humour, and giving the person a valuable lesson in don't deal out what you can't take. Even if that person appears be to perfect physically in ever way I can guarantee that suggesting the opposite generally stops people in their tracks. It also puts the focus back on to them and not you and if they've made such a remark you can guarantee there is an audience, which is why they probably said it. You will clearly come out looking the smarter and funnier to those present as any idiot can come out with a line like 'there goes cocke eye' or such like.
The reality is you will, as I have over the years, still go home and feel like crying but don't ever let those who want to upset you see it. My advise is to use the anger you feel, about how unjust your eye problem is and some peoples response, to motivate you to excel in other areas of life. Do not allow anyone to make you a victim. Let your difficulty help you empathise with and understand other peoples's difficulties and disabilities. Let it make you show kindness to others when you may be tempted to join the crowd and go for a cheap laugh at others expense. I stress that the comments I spoke about earlier are in self defense, I have never even as a child made cruel comment abouts people physical appearance unprovoked. I put this down to good parenting but also my squint. It has forced me to become confident but has restrained me from becoming arrogant. Consider your squint a friend albeit one you fall out with a lot! Remember people who are bothered by it or make cruel comments are the sort of people who would find something/anything to make a negative comment about even if you didn't have an eye problem. They are, in a nutshell, people who are not worth knowing, forget them but remember their comments and use them to inspire you to succeed in life. Surround yourself with smart, fun and caring people who couldn't care less what your eye or eye lid is doing from one minute to the next! I have a core group of friends I have known since your age, and beyond, that I still meet up with regularly they have brought happiness and support to me througout my life. I am so glad I invested my time and effort in developing relationships with these people who are worth knowing. I would rather have a squint and have them as friends than not and have people who don't really care about me.
I have a good job, a lovely home, and a beautiful wife, inside and out, she says that she doesn't really notice it that much. It is hard to believe when people say that, but even when she does notice it she says it doesn't bother her. I have to accept this is true as she's been with me for 10 years and lets face it nobody has held a gun to her head! The advantage is when you meet people who care for you or are attracted to you when you have a an eye or any other physical problem is that you know it's genuine. Imagine having a perfect set of eyes developing a squint in later adult hood, which does happen, to find that friends/partners suddenly can't cope with you the new you!
Having had the operation, on being told all these years later that the double vision risk was very low, I have over the last few days wondered why I didn't investigate this more 20 years ago. On the other hand I would maybe not have developed into the character and person I am today. I also have to prepare myself for the possibility that after a few years the squint can develop again. Sometimes even after a few weeks the muscle can slip back. In which case I will have atl east have 25 years of coping skills to fall back on!
I hope some of this has been of use to you, and I hope it is not to patronising particularly the bit about responses to cruel bullying comments. However I would hope some younger folk who may stumble upon this post may find them useful. If what I have said does come across a bit trite or patronising I do apologise, it is sometimes difficult to convey in the written word feelings and thoughts that are genuine and heartfelt.
I do hope that you can find a medical solution but if not please try and remember some of the above.
Thank you so much for posting this. I have a 6 week old daughter that was just diagnosed with congenital Ptosis. So many of these posts scare the crap out of me. The last thing I want is for her to suffer throughout her life because of a stupid eye. The doctor said her eyes will never be completely equal, even with surgery. I just want her to have as positive of an attitude as she possibly can about it. I know people will probably tease her which kills me, but humor and just being a happy and nice person can get you very far in life. Thank you for giving me hope. I know she is a special little girl and just want her to know that too. You are special too, or else you wouldn't have been given this small obstacle in your life. Thanks for sharing your story.
justin i knw EXACTLY what you;re going though. i have had strabismus about 13 years, and now i am 16 and my strabismus or turning in of my eyr has turned into a lazy eye. how great right?! -_- i feel so self consious looking at people i want to just hide in a ball and never come out. i always wonder how lucky other ppl are without this problem becuas what i would give to be able to look at someone right into the eye and not fear it no one knows except people like us. they dont get it.. i have posted my own question on here [this foum] about having someone to talk to about it cuz it sucks being the only one with this becuase its not that common.
20 years old born with Ptosis right eye.
Had operation at about 4-5 years old to raise eyelid.
I still have the Ptosis but it's not as bad, still bothers me from time to time.
But I can't never ever look at somone in the face and not worry about how it looks.
People who don't have this will never understand, not even family.
They may tell you to not let it bother you or that it's not that bad, but they just don't understand the constant worry that you have about people saying somthing bad about it or even just bringing it up.