Will my skin ever heal?

Living with the uncertainty of topical steroid withdrawal and severe eczema

If you’re going through topical steroid withdrawal (TSW), there’s a good chance you’ve asked yourself this more than once. I know I did.

For many people experiencing TSW, the hardest part isn’t only the physical symptoms: the redness, burning, oozing or flaking, it’s the uncertainty. Not knowing what’s normal. Not knowing how long topical steroid withdrawal recovery might take. Not knowing whether your skin will ever stabilise again.

The same uncertainty can exist when eczema suddenly becomes more severe or stops responding to treatments that once worked. When your skin changes in ways you don’t recognise, it can feel frightening and isolating.

I remember constantly searching:

How long does TSW last?

Is this part of healing?

Will my eczema ever calm down?

If you’re in that place right now, wondering whether your skin will recover, you’re not alone.

 

When you’re told it won’t get better

Before I even began TSW, I had already been told my skin would never recover from severe eczema.

That conversation almost led to me giving up all hope.

It came from a dermatologist at Addenbrooke’s Hospital. By that point I had paid £200 for an appointment privately and already seen multiple specialists through the NHS. I was offered immunosuppressants like Cyclosporin, but was told I would need regular blood tests to monitor for potential kidney damage. I was also offered a topical immunosuppressant.

At that stage I felt exhausted by creams and scared to start something new without understanding the longer-term implications.

Since then, I’ve seen photos shared by people who described experiencing difficult reactions or withdrawal symptoms after stopping certain topical immunosuppressants. Some of those images looked like TSW. I don’t have personal experience with that, but seeing those accounts reinforced how cautious I felt at the time.

At the time my skin was already severe: recurring infections, addiction to moisturisers, repeated courses of strong steroid creams and periods of oral steroids. From the outside it still looked like “just eczema”, but it behaved very differently from anything I had experienced growing up.

I started TSW before I knew it even existed. I just knew what I was currently using wasn’t working.

When things escalated, full-body oozing going through my clothes, burning skin and a constant thought I couldn’t switch off, I remember thinking:

What have I done? How long is this going to last?

As I started researching online, I came across information about topical steroid withdrawal from the International Topical Steroid Awareness Network (ITSAN). It was only then that I realised that TSW existed.

Given my history of steroid use, I knew the journey wasn’t going to be short.

I was scared. I felt alone and that’s when I started looking for alternative treatments.

 

When life becomes unpredictable

Living with severe eczema or topical steroid withdrawal means never quite knowing how your skin will behave from one day to the next.

You can wake up one day able to function, and the next day barely leave the house.

Plans become difficult to commit to because you don’t know what your skin will be like tomorrow, let alone in six months. Many people with unstable eczema recognise that feeling even without TSW.

I was always ashamed to tell friends I had eczema, they probably knew but didn’t say anything but when it got very unpredictable, I missed weddings and events, all at short notice and lost friendships as a result. Looking back, I realise I carried more shame than I needed to. Millions of people live with eczema and other skin conditions, but when you’re in the middle of it, it can feel like you’re the only one, especially as it can be so visible. After a while it isn’t only the symptoms that wear you down - it’s the waiting.

You stop looking forward to things because cancelling becomes normal.

Life continues around you while you feel stuck reacting to your skin.

And when you feel desperate long enough, you start looking for answers wherever you can find them.

 

The moment I stopped asking for opinions

Early in TSW, like many others, I found myself constantly searching for reassurance.

I spent a long time debating whether to post a photo in a Facebook TSW group. I didn’t want attention. I just wanted confirmation that what I was experiencing made sense.

The responses weren’t what I expected.

Some said it didn’t look like TSW or even severe eczema. Others said it looked horrific, like I had severe burns. I’ve since seen people leave these groups after similar experiences.

I never posted another photo again, not even later when my skin improved.

Over time I realised something: during TSW you look for certainty wherever you can find it. But even if you share multiple photos, people are only seeing a snapshot. It can never show the full picture of what you’re living through.

Sometimes outside opinions make you feel better, sometime they make you feel worse.

That doesn’t mean you shouldn’t ask for support if it feels right for you. Just know that replies are likely to vary. No two cases of TSW or eczema are the same, and people respond from their own stage of recovery.

I’ve also seen people post photos and be told their skin looks infected and to seek urgent medical help. Sometimes that advice may be important. If you notice signs of infection, increasing redness, spreading warmth, fever, or feeling generally unwell, don’t ignore it. Infections can escalate quickly so it’s important to see a doctor or pharmacist asap.

 

Being cautious around “quick fixes”

When you’re desperate, hope can make you vulnerable.

Early in my journey, I tried things that promised fast answers, all framed as the missing piece and spoken about in TSW Facebook groups where people were at their most fragile.

One huge mistake I made personally, before TSW, was using Chinese herbal creams, given to me by a TCM doctor, that I later discovered contained steroids that weren’t disclosed. I’ve also come across others who experienced the same. Looking back, that definitely prolonged my TSW.

Almost every month I see posts in Facebook groups about a “miracle cream” that appears to calm symptoms quickly. In the majority of cases, those products were later found to contain undisclosed steroids.

Over time I became more careful about what I listened to.

If there’s one thing I learned, it’s to be cautious of:

• Expensive ‘coaching’ or one-size-fits-all approaches. There is no magic bullet

• Products where ingredients/manufacturers aren’t clearly listed or independently verifiable

• Relying on testimonials alone as proof. A positive review doesn’t always reflect an independent experience, particularly when there is financial incentive involved.

Before launching Pheeal, I was approached more than once with offers of free products or incentives in exchange for positive mentions. It reminded me how important transparency is, especially when people are vulnerable and searching for answers.

Just because something is sold online doesn’t automatically make it safe or suitable. Many large websites operate as marketplaces and rely on the information provided by the seller.

Before you try something new, read the ingredient list, look into the manufacturer, and consider how transparent the information is, then decide whether you feel comfortable proceeding.

Hope is important. But certainty can be misleading.

 

Why healing is hard to predict

One of the most distressing parts of TSW is the lack of a clear timeline.

I remember constantly searching for stages or milestones, trying to work out where I was and how much longer it might last.

But recovery rarely follows a neat formula, or rigid stages. In my own experience it felt much more like cycles of improvement and flare-ups, something I explore further in Topical Steroid Withdrawal – Healing in Waves.

Experiences vary depending on factors like duration of steroid exposure, potency used, age, stress and general health. Eventually I realised comparison wasn’t helping, it was only making each day feel heavier.

Even during my worst phases, there were periods where my skin was calmer, sometimes even clear.

On difficult days I held onto those moments. They reminded me my skin wasn’t permanently stuck. If it had cleared before, it could clear again.

 

What I can say honestly

I can’t give guarantees. If someone offers certainty or a fixed timeline, it’s worth questioning how they can do.

But I can share what happened to me.

For a long time, nothing seemed to change. Weeks turned into months and every day felt the same. I kept waiting for a clear turning point, a moment where I would know healing had started.

There were two big milestones.

The first milestone was when the intense, constant oozing stopped.

In the early days of TSW, it had been relentless. Within days of stopping steroids, fluid was literally dripping from my skin, from my body, my arms, even my earlobes. Clothes would stick to me. Towels were soaked through. Every day felt overwhelming.

Then one day, it just stopped

It didn’t disappear forever. It came back during later flares, on and off. But that first episode was by far the worst. When it finally settled, even temporarily, it was the first sign that my body was capable of healing.

The second milestone was when I stopped relying on heavy moisturisers. In my case, I had been using a full tub of Doublebase each week. Slowly, I noticed my skin beginning to produce its own oils again. That was a huge moment for me. It wasn’t dramatic. There was no overnight transformation. But it felt like my skin was remembering how to function on its own.

I was genuinely shocked. After years of believing my skin couldn’t cope without constant support, seeing it regulate itself changed how I understood healing. Even now, that shift still feels significant.

I’ve written more about my experience with moisturiser withdrawal during TSW and eczema here.

 

Over time, my skin changed.

Not just the withdrawal symptoms, even the severe eczema that existed before began to really calm down.

Not suddenly. Not neatly. But gradually.

One of the hardest parts of having a skin condition is the constant checking. Looking in the mirror. Scanning for redness. Looking for signs of improvement or signs that things are getting worse. When your focus is that intense, it’s easy to miss small shifts.

Life didn’t return all at once, I just felt I could do more and more without any issue.

After I healed, I remember first sitting in a sauna with others, talking, relaxing and realising something had changed. I felt normal. Not perfect. Just normal. Considering that sweating used to trigger intense itching during TSW and severe eczema, that moment felt significant.

Even now, years later, I sometimes sit in a sauna, quietly and feel a sense of disbelief that I can do it without any issue.The same goes for training. Spending 20 minutes on a spin bike, sweating without fear of a flare-up, is something I once wouldn’t have thought possible. I don’t take those moments for granted.

 

If you’re in the middle of it

If you’re reading this while everything feels stuck, it will not always feel this way, even if right now that feels impossible to believe.

Healing doesn’t always announce itself.

Sometimes it’s only visible when you look back.

Just getting through the day is enough.

While you wait for bigger changes, small things that make daily life more comfortable often matter more than anything else.

There isn’t one single way to heal, skin is individual. What helps one person may not help another and recovery rarely follows a fixed path. That’s true whether you’re recovering from TSW or living with difficult eczema.

During my own worst period, comfort became the priority reducing irritation, calming flare-ups and making evenings more manageable. That’s ultimately why I created the bath soak. Not as a cure, but as something that helped me get through the day-to-day while my skin healed.

Sometimes, long before you realise it, life begins to feel a little better again.