On Feeling Disfigured


For the last few months, I’ve felt alienated and disfigured within my own body. At a quick glance, I look like someone who doesn’t take care of herself. But the truth is that I’m a mess. My body has been doing things I didn’t know it could do. I wonder if I will have scars after this, and this frightens me.

Spending my days on my bed, in my comfy PJs, on the laptop since last July when I started experiencing TSW symptoms (but didn’t know it) has grown stale. As comforting as the ITSAN forums are, I am alone in my room-cave waiting this out, giving me more time in the world than I need to torment myself over how gnarly my neck/face is. Before TSW, I was an exceptionally vain person. Always concerned with my hair, makeup… my overall appearance. It dictated how I felt about my day, whether I would accomplish what needed to be done, whether I lived life just a little bit more. Compliments from others cycled my fixation on my outward appearance.

TSW has taken that and flipped it on its tender, frail stomach.

Today, I finally had my first real cry in the bathtub. I’ve cried many times before, but those don’t count. They were obligatory cries, ones that I conjured up because my quiet anger had no other egress. Today’s cry was different. My mother, who is can be excruciatingly preachy, came to my tubside and talked to me about a character from the Bible named Leviticus. He was brought back to life from death by God, although L pleaded to be healed from his illness before his death.

Instead of the usual eye rolling spasms that ensue after this kind of biblical preachiness, I decided to just listen to what she had to say. I guess the moral of the story is that God can preform miracles at any time… Then she talked about how the moment we say “Thank you” for an undesired challenge is also the moment when we get answers. This clicked with me somehow and got me thinking. Though I’m not ready to thank anyone for this, except the irresponsible medical professionals for enabling Steroid Addiction, I wondered about what lesson I could possibly learn from all this, if there’s a lesson to be learned, if there’s a divine reason for everything.

Then I found this video in my suggestions box on YouTube, called “On Being Ugly.” A very young woman posted her thoughts on how personal outward beauty and the lack of it should not rule how we live. Some things she said were on the radical side, which I’m always a sucker for, but ultimately disagree with. Most of what she says is profound and beautiful.

I remember being like her when I was around her age (as if I’m that much older!). My philosophy on life was driven mostly by the lyrics of Jewel’s poetical ideals of beauty and my inherent hippie-like enthusiasm for  all life. That has been tainted by various events since then, but renewed by this one video and my half-assed willingness to say “Thank you” for this crappiness we call Topical Steroid Withdrawal.

After today’s reflecting, I don’t think I will spend another healthy, healed day wasted on the pursuit of happiness via appearance. This doesn’t mean that I’ve come to terms with me and TSW. It just means that I’ve realized how the feeling of being robbed of my youth by this TSW crap isn’t actually robbing me more than the wasted time of my pre-TSW vanity.


8 responses »

  1. Great thoughts here Leizel and I enjoyed the video as well. I liked that the girl said, “A lot of the time I think of myself as ugly, and I’m okay with that”. I don’t think that it’s inherently dangerous to label oneself as disgusting or disfigured or ugly AS LONG AS there is a confidence about that and a sense of not caring what people think. Once we get wrapped up in what others think, it becomes a very futile struggle because there will always be something to obsess over or worry about with physical appearance. And in a weird way, confidence is very attractive so that ends up helping the person seem more ‘beautiful’. I realized with a phrase that you put here, why TSW bothers me so much “…I look like a person that doesn’t take care of myself”. I feel that people’s perceptions would be different, if, say, I was missing a limb (NOT that I would trade that from TSW!!), but they would probably think, “oh wow, this girl is a trooper, she’s out there without a leg doing all this stuff” but with TSW, our skin is completely out of control, and for MOST people, skin is within their control. I don’t give a darn if people think I’m ugly right now, but I don’t want them to think I’ve completely given up on personal hygiene and skincare and that’s why I look so chewed up. It will be a great feeling when we are healed from TSW and can live life more freely without concern about physical appearance! Wonderful post!

    • Thank you for your kind words. I totally agree with you on the no leg thing. I think because TSW is so misunderstood, or not a part of common knowledge, we’re left to fend for ourselves, explaining to friends, family, strangers what it is that we’re going through. We cannot be easily identifiable as “fighters” or “warriors” going through a real illness. Which is why ITSAN is such an important part of going through this. Sharing each others experiences is a powerful motivator through all this. I know I complained in my post that I feel alone in my room-cave, but the ITSAN community is really getting me through this. I love reading your blog and receiving those positive vibes. It’s nice to see that someone can be so strong throughout this. Truly an inspiration.

  2. Good girl…bravo for writing all of this !! The honesty of your post will help you push through all of this.

    I read your posts and sometimes I can’t tell if it is you or me writing.

    The crying…..where can I start?

    I have never been a crier but this last year I think I have cried 2 lifetimes worth. The deep deep crying of not understanding how this happened, of not thinking I could get through it, of not being able to see complete healing anytime soon. Crying through pain, through feeling disfigured, through hopelessness.

    My mama too would remind me of biblical events or stories of saints…she reminded me of triumph after great difficulties. God keep all mamas safe and well for they give so much of themselves and we often forget to tell them thanks.

    Through my ordeal, I have been reminded of the kindness the world holds… I have seen it in strangers and family alike.

    Because of my ordeal I have a deepened my faith. I have learned that things are not in my control as I once thought. I have learned to take things one day at a time and to try to live in the here and now – thinking of how great my skin was in the past can make me sad, thinking if tomorrow it might not be healed can make me anxious. If I look to today and appreciate the progress of my skin , I can get through the day.

    So go ahead and cry….cry as much as you need to, whenever you need to. Release whatever is pent up..you might be surprised about how much is inside of you. The emotions are weighted and colossal on this rollercoaster ride. Be ashamed of none of them and truthful to each and everyone.

    Pray. Pray when you are low and ask to be lifted so that you can go on and see this thing to completion. You are stronger than you know.

    Pray for guidance.

    Pray with the rawness of your emotions.

    Listen to your mama and hold her hands and tell her thank you.

    The days are adding up and in time they will sum up to health as well as inner and outer beauty.

    I think you have found your inner ninja and you’re one day closer to reclaiming life.

    Hang I in there you fine and foxy 26year-old you!!

    • Thanks S, for reminding me to thank my mom more. I really need to because she’s really been there for me throughout this, and has been so generous to let me stay home with her. Not all moms let their grown kids stay home when in need. I have a friend who could’ve really used some help from his parents staying at home, but they just refused because he was beyond a certain age. Felt bad for him and wish his parents just gave him a chance to go to college. Then again, all FIlipino mamas would love for their children to stay home til their last dying day, hehe. How far into your withdrawal are you?

      • Hey, I started at the beginning of the year so I am in month 4.

        The bad days are farther apart and less intense. Still bad days are bad and I wish they were over. One day at a time, one bottle of moisturizer at a time.

        We are on our way girl !!! How did we ever make it through the first month???

  3. Leizel, you will come out of this a beautiful person inside and out. It is so hard to accept much of this condition. I was not very image obsessed or concerned about being pretty or anything like that for a long time. Having to deal with looking like a monster was really hard for me. At first I was ashamed and angry and tried to avoid leaving the hous and when I did I held my head down in shame. And then I started getting mad and stared back. Then I called a woman the c word for staring. At that point, I realized it was time to stop caring an try to live my life as best I can.

    So don’t worry, this is all part of the process. If you need to stay home, stay home! When you feel ready you will go out there and you will be surprised by how good it feels!

    • Thanks for your encouragement, Leslie. I’d really love to come out of this and really feel like I’ve learned something. I guess there could be something humbling about this experience. Good for you for not being too wrapped up in your image. I think it’s one thing to put yourself together and leave it at that, and another to let it follow you throughout the day. Life’s just too short to worry about such feudal… crap. Four months of this has already felt like a lifetime, I say without exaggeration. And after all this, I feel like I really can be free from all that… Lol, too funny about you calling that lady the c-word. Wish I had the guts to tell someone off for staring, like you! If I want to go out and do things, I just might have to.

      • Yesterday was my 7 month anniversary and I can tell you, it feels like an eternity. It seems like there are two things that make this hard: 1) you feel like shit and 2) you look like shit. It seems like if only one went away, things would be a lot better.

        When you are feeling up to going out, you might push yourself a little bit, and you might be so happy you did. But take your time. You will know when you are ready!

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