Greetings friends, fellow exfoliative cheilitis sufferer here. I am new to the forum and come with a plan to get rid of this disease, with a method that although at a slow pace, seems fail-proof. I have been feeling low and somewhat angry, I have another health condition, and felt it was time I banded with those suffering like me. If you don't have a support group in this modern age of community-less life, Depression
and feelings of emptiness can easily take a hold of you.
We all know the story, so I'll just go through mine quickly, ('cos that's what we do). I've had EC for as long as I can remember. I am 19 now and ever since secondary school I think have been aware of something wrong with my lips. The earliest however that I can remember vividly acknowledging my horrible lips was in the spring/summer of year 9, when I was about 14. I remember this so vividly at the point as my earliest memory because there was a girl in my class for whom I just suddenly begun to madly like. I had never really noticed her before, until I think I was sat next to her in RE. This girl is beautiful. Anyway I started to talk to her on Facebook all throughout that Easter break, having never properly spoken to her before. We kind of hit it off, it was clear I liked her, and I think, she might have been taking a liking to me. So on the first day after the break back to school, we had RE, and we were in the hall, and she started to talk to me and flirt. I was soo self-conscious and acted strange, as if I was a shy person; my lips were bad. I was licking my lips throughout the entire class and never looked at her dead on.
And thus commence two and a half years of utter hell as I shy away from this girl who I'm mad for until she loses all interest in me.
That is the first time this damn skin disease had a huge impact on me. From then, begun this strange relationship with this young beautiful girl, where we mostly spoke on FB, and I hid in person. Come the next academic year and our relationship whatever it was essentially began to diminish. (By the way I mean relationship as in the basic definition of the word.)
Exfoliative cheilitis has caused me my only real regret of secondary school. I want it gone, for good.
Looks like my quick story wasn't so quick. Anyway fast forward from that point over two years to the end of year 11, and I finally decided I had had enough. I wanted to know what this thing was and how to get rid of it. I was amazed to find so many other sufferers and descriptions entirely corresponding to mine. I felt so comforting to know I wasn't alone.
So that was, what, almost three years ago already now when I found out what this was. Since then I've learnt some and come up with a strategy. I'm not entirely sure when I came up with it, in its current form I believe it was around September, but I had a basic form of the idea around this time last year (though applied only to the ugliest part of my lips).
This has been my progression since the end of year 11. I thought I could just 'manage' the condition after finding at the time a pretty good lip moisturiser. Unfortunately however, the part of my lip to the right of the centre had a very tiny cut, which, as it was unable to heal due to the nature of where it bloody is, became larger and sort of 'split' a part of my lip affected by EC into two. What this did was make a part of my lip look more inflamed than usual and noticeably uglier. So even then when exfoliated it was still unattractive as my lips looked more swollen.
So 'management' is out of the question for me. The idea I have is essentially the leave it alone method, but with a realistic approach. We all know we cannot handle the social suicide that would occur by not caring about how our lips look and doing whatever we want (or at least most of us). Not gonna happen. For me to a degree it doesn't bother me too much around guys, but around girls, esp that girl, don't even think about it.
Yet this seems like the only method we know to work. But here's something I noticed in my lips. The longer I leave my lips for, the longer they are able to stay looking fine for, after subsequent cycles. For example, if it takes 3 days for a particular part of my lip to get unbearably dry and ugly, leaving it for 4 or 5 days pushes back how long it takes to get to that stage. Now it's hard to be precise and 100% confident in this, because it's difficult recording this and I haven't been taking pictures. But if we assume this to be true, then it seems as though we are getting the lips used to a certain level of dryness, and pushing back the time it takes for the skin to effectively die. It's as if we are strengthening our lips.
This has been my plan since September. Let us begin at the first day of the cycle, fresh new raw lips. This is day 1; I leave my lips alone for as long as I can and record how long I do so for. I record so by each morning, or every 24 hours, making a dash with the letter "I" on Notes on my iPhone; sort of like tally marks. When the cycle is over I begin again on the next line and record how long I can go for in the next cycle.
I am on a gap year so it has been possible for me to go long periods of time without peeling, whilst all my friends are at university. However I have not had the complete luxury of not needing to go out, due to family get togethers, my one good friend also on a gap year etc. Also I've been preparing for resits and university entrance tests, and as you might have found the dryness of the lips can become very irritating and make it difficult to concentrate. As well as the fact you can go insane being alone for a year.. so I do not recommend entirely segregating yourself from social life.
There are some issues with this strategy, as at least for my lips not every part of my lip is at the same stage of progress. Some parts take longer to 'die' and turn white in the shower, and other parts want to fall off by day 1 or 2. I initially had been neglecting the weaker parts however I recommend getting all of your lips up to the same level first. I have yet to accomplish this. If you do it makes it easier to record your progress in similar to my fashion (unless you want to develop a more sophisticated way of recording - I was planning to take a picture of my lips and label the different parts of them via numbering and then record the progress of each part), and it also just makes it easier to do normal life things.
The realistic thing about doing it this way is that you can still maintain social situations in your life, it requires you however to have a period of days each week where you don't see anyone [you feel uncomfortable seeing you like that].
I do not go to school but let me present the strategy in the format of someone who studies/works Monday to Friday. What this requires of you though is that (at least most) weekends you do not socialise. For me if I could at least get through school or work anyway that would be enough socialisation for me. (Gap years with EC and this other thing are REALLY LONELY.)
Let us assume your lips, or your weakest part of your lips, get quite unattractive by the third day. You would begin leaving them alone on Thursday until Monday morning. So on Thursday and Friday you are in social situations, however your lips are not making you paranoid, and you have been able to leave them until Monday morning, which is 4 days. My theory is that after doing this at least two or three times that weakest part of your lip will strengthen and last (last=still looking decent) three or perhaps even 4 days. So you've increased the time you are comfortable around and have softer lips by at least a day.
When you noticed this has happened, you move back a day till Wednesday and repeat, leaving till Monday morning, repeating this for the necessary number of weeks until again you've noticed your lips strengthened. You keep doing this and after time(!!!) my hope is that they will have improved. So essentially the strategy is allocating a period of time you do not wish to be seen and allowing your lips to be their ugliest in that time.
So you might be wondering, well you've been doing this since September, surely if it's gonna work, it's already been working for you?! Well like I said, it's hard to say for certain, because of the nature of my lazy recording method; I do think there is change, but it's so easy to forget how something looked when you are talking about slow marginal change. So I feel very sure for example my bottom lip improved a lot, but it's still very much experimentation at this stage.
I also haven't had the luxury of being able to see no one other than my family, due to get togethers, seeing one of my mates, friends coming back during breaks etc etc, and this is a very long term method. There are 52 weeks in a year, so far it's been what 26 weeks, and I haven't followed the plan religiously.
Currently I am now focusing on bringing the weaker parts of my lip up to the rest, which I shortsightedly neglected. In September I hadn't thought about the strategy properly enough as I have now. So I have, I believe, strengthened some of my lips (a larger section) and having allowed the weaker parts to carelessly fall off, I am now trying to improve them. This is why I suggest focusing on your weaker parts first, and neglecting nothing. In a way I was stupid and perhaps could have been even further by this point.
So guys, this is a long term method, which is most certainly doable. If you have friends who like to go out regularly, bail on them sometimes, or (if you're older esp) ask to go out on one of the days of the week between Monday and Friday after work rather than the weekends. For those who lips are very weak, you'll be starting from Friday as your day 1 to Monday morning. From Monday to Thursday exfoliate as normal keeping them as beautiful as you can as you would with your best managing moisturiser. I don't think doing this reverses the progress.