An introduction: Why I am writing about droopy eyelid / ptosis and retraction

I am 33 years old, and there is one specific event that triggered me sitting here sharing these thoughts I normally prefer to keep to myself. And sometimes but rarely to a close group of very supportive friends. Three months ago I walked into a operating room to have one of my eyes, which retracts, repaired. To define retracts, I mean my upper eyelid pulls up too much by itself, so you can see the white above the pupil at most times. To give a visual, its sort of like a permanent shocked look. Mine is still pretty mild, but has been getting worse lately. I will provide pictures soon.

My other eye on the other hand has what is clinically know as ptosis. To most, simply as a droopy eyelid. This eye is not being operated on, but that is a whole other story.

In any case, I have been suffering from these two eye issues for as long as I can remember. There are physical manifestations of problems due to this, but most are psychological, which I shall address as well in detail in further posts. But the biggest physical is that my eyes are asymmetrical. They are about 4mm difference between where the eyelids are, which on a 10mm eye is a lot. Which causes a great amount of social anxiety, at least for me it does.

But on this day of the surgery, in a rare moment for me, I was blindly and overwhelmingly hopefully that this was the solution to my problems. That today I will walk into the surgery, and tomorrow be a new person with perfect asymmetrical eyes. That my problems of social anxiety will melt away, and I will have a new air and confidence about me. That life moving forward will be simplified, and much, much social and better.

I am writing this because I was wrong. Its never that simple and surgery has a certain give and take to it. The surgery in fact didn’t make my problems lesson, but actually might have increased my problems several fold. In the depths of a deep, deep depression that has lasted for the 3 months since surgery and will continue on, I made a strange decision to isolate myself. Not a good decision at all, which I am well aware of. Last thing you should do in a depression is be alone. But a decision I made regardless. I feel broken by how my eyes look, and decided that if I am going to isolate myself, not to go completely insane, might as well write about this a bit. The decision to isolate myself is out of my incredible fear of communicating with people and looking them in the eyes for too long, cause they will notice my lazy eye and be disgusted, or repulsed or whatever. It is an irrational fear, and it really shouldn't matter what people see or think, but we are social creatures, and I am overwhelmed by that fear. And in this instance it doesn’t matter what anyone says, that they can see it, it doesn’t matter, etc. My mind races and that’s all I think about during social interactions anyway.

As you can probably tell by now, I am brutally honest person. And I am not at all positive about my life experience with this. If I am too nihilistic, I apologize but this is how I feel and it will be my tone to be true to myself in conveying this story. And I want to be upfront that there are worse things that could happen, that I am a very lucky person with great friends, good career, and good health otherwise. And I try to be cognisant of the real problems of the world, and my small problems by comparison. But the truth is, I’m living in my own head and it is a struggle to see that perspective outside of myself, because ultimately in my world this is the number one problem. This is the overwhelming issue of concern.

I don’t have any great “call to action”, do this and things will get better final answer. I am writing this at a point where I still don’t have the answers, and still not sure how I will even deal with continued asymmetry of eyes. What my next steps are. I guess I writing this to the small community of people out there who have this issue and themselves might not know how to deal with it. And whom people with symmetrical eyes, the majority of people, just don’t understand the social anxiety this condition can and does cause. Just to sort of say, I get it, and I’m with you and I know what you are going through. And maybe in the hopes that some of them will reach out and tell me their stories, and maybe that might not make things better but they won’t feel as isolated as these eyelid issues made me feel over the years. Before writing this, I looked on the web for stories of people like me, and found almost none. So either there are very few of us, or there is no forum to share these stories. Maybe whatever this becomes, most likely a blog entry could be that forum. I will take it from there if it needs to become more.

I am already thinking about what to write next. Probably how I hid the ptosis for years, how it affected me psychologically, or even the surgery that went wrong. There is a lot to cover. I just gotta figure out some sort of structure first. I’m new in this attempt to concisely document this topic. I hope you bare with me.