This month is Eczema Awareness Month. Years ago I never would have believed such a thing existed. Who needs awareness about eczema?
Having lived with TSW, Topical Steroid Withdrawal, for over 4.5 years now, my view has drastically changed. Millions of people are stricken with eczema and there is such a large stigma around it. People tend to think it’s contagious or formed from unhealthy habits or lack of cleanliness. It’s unsightly, distracting, and all around embarrassing.
I used to think I had bad eczema until I was diagnosed with Red Skin Syndrome. IT IS NO JOKE. You learn a lot about yourself, the people around you, and what all out strength to endure actually means. I am grateful to not be in that full body state anymore. It feels like a lifetime ago, especially what it cost me.
However, I’m still not healed from this steroid induced eczema, and everyone still sees the redness and irritation because there is no way for me to hide that, unless I deployed Operation Buy All the Makeup, and that’s never going to happen. My anxiety would be even worse trying to pretend that I’m normal. Not sure I was ever meant to be normal.
Someone once wrote me to send love and speculate that perhaps this happened to me because I was someone who would use their voice, and that she was grateful it happened to me. She also expressed that she’s not a masochist or sadist and could never WISH anyone pain, but that if someone had to be in pain, it needed to be someone who would use it and find a purpose for it.
I guess I volunteered as tribute, existentially speaking.
I am also still patiently waiting for the extra lesson I’m supposed to learn from this (besides gratitude), unless it’s to love yourself in every form, because that’s still a mental struggle. I don’t think anyone with something so prominent in view is 100% comfortable in their skin (well, maybe Ashley Lora 😉 ). It takes a lot of digging some days to get out of bed. I will do the feeler test, which is where I run my fingers lightly over my face and neck. I feel for the cracks and abnormalities that have become so familiar. As I walk to the mirror, I pre-assess the damagae I think I have, only to commonly find out, “Damn“, I am nowhere near accurate. Dry plastic skin is usually gracing my right cheek, as well as half suspended flakes semi glued around my mouth. My neck is also a battlefield, crimson and torn. It makes me cringe just writing this, especially because of it’s accuracy, and then the burning that comes after. I end up having to exfoliate that layer before work, leaving my face blotchy and my neck with deep lines, exposed like a rorschach test.
And my arms… they are a far cry from being healed. They teeter back and forth, cracked and red, to semi healthy color and smooth. It’s been much more of the former.
All there is are coping strategies. When people ask, “Are you in pain?”, it’s not entirely the right question. The question is, “HOW much pain are you in?” I don’t think I’ve woken up in 4.5 years without being in some sort of topical pain. Most days now I can grin and bear it and make the most of my day because I don’t like pity or the thought of people showing me love because they feel sorry for me. But there are days, usually 3-4 times a month where you just gotta lie vulnerably on the floor and let the water works flow. I’ll have had an intch anxiety attack, where my flesh feels like fire and my heart feels broken and my mind erodes. I just constantly try and focus on something I’m grateful for, and breath. And then move on to thinking about the next thing I’m grateful for. So on and so on until my heart rate has calmed and the tears have stopped.
This is not living. It is pain management. It is surviving.
I wish this on no one.
Whether it’s TSW or straight up eczema, it sucks. There is no other way of saying that. It’s not just skin. It’s not just a cut, or sore, or tiny scrape.
It is deep, and demoralizing, and seeps into all parts of your life: work, relationships, social constructions… it can completely tear someone’s world apart. Our skin is our largest organ and the most interfacing with the world. We are quickly, and often times, harshly judged on our appearance. And we judge ourselves. We can feel inadequate, unlovable, and expendable. We can feel pain, and anxiety, and depression with certain movements, climates, and activities.
I have this quirk about myself. I tear my food and rarely ever bite into things that merit biting — burgers, pizza, and the like. Instead, I tear off smaller chunks and place them strategically into my mouth. Why? I usually tell people it’s a funny habit I picked up after having braces for 4 years. The exposing truth is that it hurts sometimes to open my mouth wide, fearing the skin around it will crack and peel easier. So food, too, even causes anxiety — not just what I’m eating but how I eat it.
This is an uphill battle. And even though it’s arduous and we usually have to dig deep and give ourselves pep talks before we leave our homes, I am never going to allow this condition to steal my entire existence. I will cry in order to march forward, not melt. I will advocate for myself and others even when eyes are rolled in my direction. And I will continually work on my mind, everyday, in order to succeed in knowing that even though I may never be the most beautiful girl in the room, I will always strive to be the one most worth knowing. I want to leave people better than I found them and keep them from feeling the suffering many of us have endured.
Unhide your eczema. Tell your story. Save a life.
Love, B. R. Banos
2 thoughts on “The One Worth Knowing”
Hey Brianna my names Blake and I’ve been suffering from tsw for about 1 year and a half. And you’re right it is no joke, its hell on your body and especially your mental state. I’ve never experienced depression before like I have going through this (and that’s with a supporting family and loving wife). I’ve went through all the symptoms like you have and the continuous cycles of one month oozing like crazy and the other feeling like Rango shedding in the scene where he flys out of the car and the sun shines on him lol.
Anyway I was wondering if there was any fellow tsw survivors get some sort of disability? because I’ve lost my house, and job and need some sort of income to help support my family. You’re truly an inspiration to all of us. God bless
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Hey! Im so sorry to hear this =( i do know some have found luck with getting disability. There is certain criteria you have to meet i believe, financially. I didn’t, so i didnt get aid. Post this question in the ITSAN group on Facebook and I bet you’ll get some good answers from ppl who may have faired better.