I know your pain.
I know exactly where it hurts, deep down as well as superficially. It’s everywhere, under and over, and in-between. There doesn’t seem to be an escape.
We search for ways to explain this hurt, this unyielding, overpowering suffocation that is Topical Steroid Withdrawal. It’s usually to no avail. The dictionary just doesn’t hold the answer. It’s only something other sufferers understand.
I understand the burning. It’s like someone keeps a heater flesh against your body and it pulls up anxiety, like a vacuum, from your soul. You try to breathe, but it doesn’t help. You try to concentrate on something else and it rarely works. So you put ice on it. It helps, temporarily, but you start to shiver. Your body is cold. So you put a blanket over yourself. Still shaking. So, another blanket.
I understand the oozing. It’s constantly being wet, being sticky. You wish it away so badly. Sometimes it’s so bad it drips. You are a relentless faucet with no knob. You blot and dab and desperately try to cover it up. It makes your body forget how to regulate itself.
I understand the lack of temperature regulation. The more ooze and burning, the more your body forgets to function. Am I hot? Am I cold? Is it half and half? I feel like I’m sweating but I’m shaking. Or is that the ooze? Is it all three? Your mind is in this perpetual state of exhaustion, questioning everything.
I understand the crust. Fuck. It’s dried ooze, yellowish, sometimes orange. And the second you itch it or rub it, the ooze comes back. You get so angry. Why doesn’t it just heal? Why won’t it go away? It crusts over and over and falls off over and over. It sticks to everything. Molting over and over. Over and over. Over and over. Hope just laughs in your face.
I understand the smell. It’s moldy in nature, and pungent, and it screams in your face as you wake up in the morning. It melts into your clothes, staining them. It stains everything, really. Your bed sheets are a massacre, a war zone of your body crying.
I understand the itching. It’s like nothing you’ve experienced before. It comes on strong, drilling deep into your bones. And when you start, you can’t stop. Your chest constricts and you are at the mercy of your reflex and impulses. It’s like the world around you disappears and you have nothing to hold on to but that itching. You black out. You can’t breathe. And when you’re done, you come to. You see the damage. You hate yourself. You cringe. And those people around you that tell you, ‘Stop scratching,’ you just want to sock them in the face. You want to yell and scream obscenities at them. You want them, for just that fleeting moment, to feel what you feel.
I understand the exhaustion. I think back to the good days of being at Disney World and being dog-tired after spending an entire day riding rides and walking the entire park. That’s what everyday feels like during this withdrawal. You’re on a treadmill, uphill. This is just getting ready in the morning. It leaves you weary, unable to cope sometimes. All you want is to lay in bed, staring blankly at a television that indefinitely promotes vanity, and outer beauty, and labels. Just mindless nonsense that you wish could numb the pain.
I understand the insomnia. God, are you tired. You want nothing but sleep, and yet it taunts you. At night, you lie awake. You’re in pain, your body is restless, it itches or burns or you can’t get comfortable because if you sleep one way, you may ooze more, or if you turn one way, your body is worse with regulating its temperature. A fallible negotiation.
I understand the hair loss. I wish I didn’t. It makes me sad. I had beautiful hair that I cherished, probably more than I should have. You try to tell yourself, “It’s just hair.” But it’s not. It’s an outward cry of pain to see it fall out. It’s everywhere. It thins and you watch bitterly as your hairline recedes. You have no control. None. You are just along for the nightmare. Just one more thing to make you feel less beautiful.
I understand the anxiety. I’ve never had it be this tangible before. Looking in the mirror can set it off. There is always that elephant in the room waiting to land on your chest, making your breathing quicken and tears form. You don’t want it, you don’t want any of it. You want to be strong, you want to be resilient. You want to leave the house without people staring at you. And the questions they ask can completely ruin your day. The judgement. The torture. It’s irreversible. It is now engrained in your mind. You are the main attraction everywhere you go. You just want to be invisible.
I understand the anger. It’s usually targeted at the medical community. They failed you. They were supposed to be your friend, the answer to your qualms. Instead, they are the origin of your suffering. They exploited you. They took your money out of greed. They didn’t care. They didn’t want to really help you. This is how you feel. You want to march into their office and demand they apologize and admit to their wrongdoing… but most won’t. And it tears you up inside. The injustice. The fact that no one seems to listen. That these doctors are going to continue to ruin lives because of a dollar.
But, there is one thing I don’t understand.
I don’t understand the lack of support from loved ones. We are in a crisis, something we can not help, and to be looked down upon by the people we love most is incomprehensible to me. I have a support system that is my backbone. They tell me I’m beautiful, I am brave, I am strong, and that they will always be there for me. Everyone suffering through this deserves the same. When I hear the opposite, my heart stops.
We are not lazy. We are not seeking attention by acting out. We are desperately seeking an end to our suffering. Yes, it unfortunately involves making others suffer through it with us, but we need comfort, not cruelty. We need support, not cynicism. We know we are a mess and that we are a burden at times, but don’t cast us aside and give up on us. This pain could be too much without you.
And to those of you suffering, tell your support system everyday how much they mean to you. Give them validation. Give them the same love you want to receive. They are hurting through this as well. They may not know our struggle, but in turn, we don’t know theirs. Shower them in ‘thank yous’ and ‘I’m gratefuls’. They need support too.
Topical Steroid Withdrawal is not just a skin condition. It is so much more than you could ever imagine. Treat those who are suffering with gentle care. We are fragile, yet harness so much will to push through until the end.
Remember— you are strong, you are beautiful, you are brave.
Love, B. R. Wren
13 thoughts on “A Letter to the Suffering (TSW)”
This is soooooooo amazing!!!!!!!! Out man you are so right.
This is so incredibly raw and powerful. You are a ROCKSTAR beyond… Healing love coming your way and because you are not about you , but about all the others – I know sending you this love will end up going where it is needed the most – you are the Fountainhead.
Thank you so much for this. That is so touching.
Listen Carefully. God told me that if you stick through this you will be a very strong and powerful voice that will chage and mend the world at paces never thought emaginable. Stay Strong. Stay Steady.
Very well written.
Please consider taking grape seed extract. It has made a world of difference for me. I order it from world image naturals. They recommend 3 capsules a day. I take 9. I’ve had a major decrease in redness and itching. It’s worth a try.
thank you so much for your courage to share your story. i’m five months out from my wedding and only just realizing that steroids have severely compromised my skin. super scared that i’m going to look like a freak show come july but also absolutely sure i want to be healthy inside and out in the long run, not just for a week…. stay strong XX
I know staying on steroids longer, when you’ve already made up your mind that you want to quit, is hard, but I wouldn’t want you to miss out on your wedding day =( you can ask many others (on the ITSAN facebook group) what they did around their wedding day going through a withdrawal xo I wish you the very best! So glad you have a partner to support you.
I love this. I love your blog. You’re an inspiration for people with skin conditions! You should be proud because youre so very brave. This is one hard, tiring journey but we can get through it together 🙂 xxx
I’m very grateful for your kind words. We are all in this together and are fighting to be heard. Sending you love on this journey. I’m almost 14 months in and I feel so much better than a year ago. Healing does happen. Xo
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thank you. this made me cry.
Thank you so much for writing this. I needed to read this. Am currently on 9th month of tsw and depression has hit me hard now feeling like there’s no end in sight…