What I Wish I Knew in the First Year of TSW

I still remember the moment I realised my body wasn’t going to bounce back in a few weeks.

That this thing, Topical Steroid Withdrawal, was going to unravel everything I thought I knew about healing.

The first year was brutal. I felt like I was grieving a version of myself I barely recognised. I didn’t know how to explain it to the people around me, or how to ask for the kind of support I actually needed. I was just trying to survive.

If you're in that first year now, this post is for you.

Oct 2022 - One year into TSW

This is what I wish I knew about the TSW healing journey back then, the things I wish someone had told me. Not just as information, but as reassurance. A soft place to land. A reminder that even in the middle of it all, you're not alone.

1. You’re not doing it wrong

There is no "correct" way to do TSW.

Your healing won’t look like anyone else’s. Your body might be flaring in ways that feel extreme. You might feel like you’re going backwards, or like nothing is working. That doesn’t mean you’re failing. That doesn’t mean it’s not working.

TSW is chaotic. It’s unpredictable. It often gets worse before it gets better.

None of that means you’re doing something wrong. It means your body is working incredibly hard to detox, repair, and recalibrate.

And I know that sounds abstract, especially when your skin is cracked, your sleep is broken, and your whole world feels like it’s falling apart. But even when it feels like nothing is happening, healing is happening.

You are doing more than enough.

2. Rest is not laziness. It’s medicine.

This one was hard for me. I used to measure my worth by how much I could do in a day. So when I could barely leave my bed, when I couldn’t work or show up for others like I used to, I felt useless.

But TSW asked me to learn a kind of stillness I had never practiced before. And eventually I realised that rest wasn’t a pause in my healing. It was my healing.

Your body is doing deep internal work. Rebuilding layers. Regulating your nervous system. Flushing out inflammation. That kind of work requires rest. Sometimes doing nothing is the bravest, most productive thing you can do.

Rest is not weakness. It’s repair.

3. The emotional toll is real and valid

No one prepared me for the emotional part.

The shame. The rage. The fear. The feeling of being trapped inside a body I no longer recognised.

This is not just a skin condition. It is a full-body, full-life experience. And the emotional grief is just as real as the physical pain.

I didn’t realise I was holding trauma. Not just from the withdrawal itself, but from years of being dismissed by doctors, of not being believed, of being told it was just eczema or that I was overreacting.

The constant stress, isolation, and confusion leave a mark.

If you feel numb, anxious, angry, or deeply sad, that is not an overreaction. That is your nervous system trying to make sense of something overwhelming.

It deserves attention. It deserves tenderness. You deserve both.

4. You won’t feel like this forever

When I was deep in it, I couldn't imagine ever feeling "normal" again. It felt endless. But the truth is, healing doesn’t happen all at once. It happens slowly. Subtly. Sometimes quietly.

You might not notice the shifts at first. But then one day, you realise you haven’t itched all morning. Or you went outside without a flare. Or your skin felt okay in the shower. Or you laughed. Really laughed. For the first time in a while.

Those moments matter. They are the breadcrumbs. They are proof that things are changing, even if it's not in the way you expected.

You are healing, even when it doesn’t feel like it.

5. You are still whole

This is the one I struggled with the most. TSW stripped away so much. My appearance. My energy. My confidence. I didn’t feel like myself anymore.

But over time I started to understand that healing wasn’t about becoming someone new. It was about coming home to myself. Underneath the symptoms, the fear, the fog, I was still there.

You don’t have to wait for your skin to clear before you start reclaiming your sense of self.

You are worthy now. You are whole now.

And you are allowed to see beauty in yourself even if your skin doesn’t fit society’s idea of what’s acceptable.

6. You don’t have to do this alone

The early days of TSW can feel so isolating. Most people around you won’t understand what you’re going through, and trying to explain it can feel exhausting.

But there is community out there. People who do get it. People who have cried the same tears, who’ve navigated the same doubts. People who will never judge the way your skin looks or how long it takes you to heal.

Finding just one safe space, whether it’s a journaling circle, a support group, or a trusted friend, can make all the difference.

If you’re not ready to talk, that’s okay too. You’re still allowed to belong.

A Gentle Invitation

If you're in year one, I see you. I honour how hard you're trying, even if it doesn’t feel like trying. I know what it’s like to wonder if you’ll ever feel normal again.

You will. In ways that might surprise you.

Not because the journey is easy, but because you are incredibly strong, even when you don’t feel that way.

If you’re looking for more support, I host free journaling circles twice a month where you can show up exactly as you are. Check out upcoming sessions and sign up here.

And if you’d like to know when new posts go up, you can sign up to my mailing list. I’ll only send what feels useful, gentle, and real - things to help you feel a little less alone in all of this.

With love,

Shai x