I feel you, i know exactly what you are talking about.
But you know the point is that you have some kind of control about how this affects you. Obviously not completely but in some parts. My lips are way worse than yours and i still manage to get out sometimes and meet some people etc. And since your lips are not as bad, you can do the same.
I cannot just jump out of the window, therefore I have to live somehow. Doesnt matter if this life fulfils me or my dreams, but like i said i have no other choice than that. Its depressing and its even worse that literally no one can help you. I just tried to get in contact with a Doctor in italy who cured a Butterflypatient. Unfortunately she never responded and the People in the University in Germany that works with her said that my condition is not a rare skin disease and that i should visit a regular Dermatologist.
Even if there is a way to cure it through skin transplantation its almost impossible to get in contact with these people because they dont view EC as an emergency. So I basically gave up trying to cure this, i just live from day to day.
Oh and you said that you are actually attractive. Dont waste that haha, do you work out? Get yourself a good body and than maybe your self-confidence gets a little boost. Because since your lips are not as bad anymore, a pretty face and a good body can distract from something like a light version of Ec very well.