I don't know how to start this. I don't even know where to begin. To tell you the truth, I never expected my condition to last this long. It's been almost 5 years since I first contracted EC, and I feel as if I am right back at the start of my journey. Back to the shame, back to the pain, back to the humiliation. For the past 9 months or so, I underwent an extremely strict diet. No fried foods, no spices, no sugar, no wheat, no dairy, no seafood, etc. I cut out basically all inflammatory foods, and for 6 months I underwent this grueling diet. I went to an Eastern Medicine Doctor that was so ridiculously expensive, but my parents were willing to pay to cure me. 6 months, and my lips slowly improved.
I am not sure whether they truly improved though. I think they did, but the progress was so ridiculously slow, and I didn't take photos, I don't know if they improved. However, during my birthday in October, I had a cheat day. I ate whatever I wanted, for the entire day, and I stuffed myself. But, that cheat day never stopped. I saw no repercussions from my cheat day, that I reintroduced these foods back into my diet. I would tell myself "Tomorrow, I will go back", but tomorrow never came, and I continued to stuff myself with these sugary snacks that I dreamt about when I was dieting. Of course, I gained weight during this time, and I think I have developed an eating disorder. I will binge until I feel absolutely disgusted with myself, and I tell myself that I will start dieting the next day. It never happens. I am so weak. My lips have gotten worse.
I am so ashamed, my parents are trying so hard to help me and I eat all this junk food in secret. If my parents knew, they would be so disappointed, and I can see their faces already. Just today alone, I ate almost half a box of chocolate. I disgust myself.
I'm scared. My biggest fear is that I will diet for the two years that my doctor said I must follow and in the end, my disease won't even be cured. I'm afraid that I will not be able to stick to that diet long enough. If there is no cure for me, and I'm afraid I will be stuck with this plague my entire life. I have lost a lot of motivation, and I am afraid to have hope because every glimmer of hope I've seen has been crushed. As I type this, tears are leaking from my eyes. I am so upset with myself for not sticking to my diet. I am so upset at myself for being weak. I am so upset with myself for worrying about how others see me. And I am too fearful of what might come. That I will never be cured, and that I will run out of options.
I honestly wish I was dead. I do not wish to kill myself, but rather that I never existed in the first place. I was also born with many physical problems, such as eczema and idiopathic scoliosis. I think all my problems are related but I just can not find the connecting piece. I look at others, with their perfect lips, and I feel such envy. I can not have a SO, I force myself to be outgoing and while I have friends, I continue to fear that they internally judge me and hate me for my appearance.
Those on this forum who are searching for a cure. I wish you nothing but the best. We are cursed with one of the worst diseases, because it's so rare, and so physically deforming. I would not wish this on my worst enemy. I just want some words of advice. I need some encouragement. I am so tired of hoping, I am so tired of searching for answers when none are there. I don't know what to do anymore, and I feel as if I have hit a breaking point. I think I must have done something to wrong God, if there is a God, and that he has cursed me for my sins. Please share your stories, I wish to become more connected in this fragmented community. I need someone to help me reach my goal, and I wish to help someone through theirs. To you all who are still searching, I wish you the best of luck. And I send this message out into the internet as a final plea. I hope some kind soul will listen and respond with some words of wisdom. Thank you for reading.