Imagine waking up multiple times a night, scratching at your hands, your arms, your neck, your face. You have to keep the room frigid because your skin’s red and hot and even a slightly warm room makes everything worse. You scratch so hard and so often that you’ve reached a new level of raw, with unidentifiable ooze leaking out and crusting over.
I’ve had small patches of eczema as far back as I can remember, just a few quarter-sized spots of red rash on the inside of my elbows. They never bothered me much, but social cues everywhere tell women that skin problems should be dealt with, quickly and quietly. So I started using steroid cream, prescribed by a dermatologist, and I used it every day from November 2012 to May 2014. Nobody in the medical field told me this treatment might be a problem. They all encouraged me to slather my skin in steroid cream on the regular.
There’s no harm in it, or so they said.
And so it went that suddenly “patches of eczema” started spreading to new places on my body, places I never had problems with before. From my elbows it moved to my arms, to my hands, suddenly it jumped to my face, then my neck, then it took a turn southward to areas we don’t need to discuss. “Here’s a stronger steroid cream,” was the only medical advice I received for this absolutely bewildering predicament.
As someone who believes your body wants to be healthy, the entire process of waking up to cake myself in prescription creams felt like I was missing something. But what else could I do?
I started Googling and almost too quickly found an entire community of over 3,500 people who had gone through this exact same thing. It’s called Topical Steroid Withdrawal, aka Red Skin Syndrome, or TSW.
The many who experienced it and fully recovered were testament to what my gut was telling me all along: the only way to heal is to quit cold turkey. So right after I graduated college in 2014, I stashed the creams and began the long journey of withdrawal.
Easy. You think you’re gonna hit it out of the park and be one of those wizkids who only takes six months. As you near six months and see no real progress, you move your mental timeline to nine months total. Then to a year. Then to a year and two months. And then you realize when it comes to TSW, you are no better than average. And on this, the day of your two-year anniversary, you’ve slowly accepted the fact that your skin might be like this for the rest of your life. Because you can’t remember what completely normal skin feels like.
For the past two years, I’ve watched my skin literally slough off. With no exaggeration, the skin I’ve shed in flakes over this time period would collectively weigh 5 pounds. I’ve gone through months of not being able to sleep more than an hour at a time, waking up in pools of ooze and sweat. I’ve run to the bathroom at work countless times because I can’t delay clawing at my skin anymore. I’ve had clumps of hair fall out and eaten only bone broth for days in hopes of it helping me heal.
Why me? Why this? Why won’t it go away? No one seems to know the answer.
Let me take a breather here to say that I am grateful. There are people who are going through this who have it much worse than me, who sat in the bath for days because that’s the only way they could move their body, who had to take a year off of work or school. And there are so many other diseases and illnesses that are far worse and have no hope or expectation of an end date. All things considered, I’m doing OK.
And as much as I hate TSW, I wouldn’t be where I am today if it weren’t for it. That summer after I graduated college, I began the process of withdrawal and couldn’t handle going on job interviews because of it. Feeling like a fish out of water dressed in a business suit, I sat across from potential employers, covered in rash and struggling to concentrate on their questions because my skin was screaming at me to scratch, scratch, scratch. I’d excuse myself to the restroom, attack the itch, and attempt to stop the blood before returning to, “So, tell me about some of your strengths and weaknesses.”
At the end of the summer, in pain and feeling completely lost, I signed up for a General Assembly class and moved to Washington, D.C. In a way both literal and figurative, I wanted to shed my old skin and become someone new in a new and inspiring place. And even though the pain has always been there, I’ve never felt so lucky to be surrounded by this city and all the amazing people who call it home.
I sleep just fine now except for a few nights here and there. My hands and wrists are the slowest to recover and still go through cycles of raw to ooze to scab – rinse, and repeat. But if I compare them to the first few months, they’ve come a long way. And some areas of my skin are completely healed. As I said before, I am grateful.
I’ve learned that good people are everywhere. And when it comes to skin diseases, there are two types of these “good people:” the ones who look at you with eyes full of wondering what the fuck is going on with your skin but ignore it, and the ones who genuinely don’t see it. They’re looking at you, not your skin.
Second, you are stronger than you think. You can roll your eyes all you want, but it’s also undeniable. There will be days when you feel weak, you curl up in your cave and wish the world would go away. And there will be days when you say fuck the world because I’m here and I’m going to keep doing my thing.
Third, confidence is everything. Your grandma was right.
The adage says that progress takes two steps forward, one step back, but I’d like to submit a correction for TSW. It takes more like .25 steps forward, .20 steps back. And then a spot suddenly heals. And then a month later it might crop back up.
And if for some reason, I never get through this, I’ll be OK. Sure I might have to do an “Irish Exit” just to go scratch. I might have to wipe the flakes off my black office desk multiple times a day. I might avoid running on occasion because the sweat makes everything inflamed.
But I’m gonna keep doing what I want to do and not let this shit hold me back.