Laurie's Story - A lifetime with eczema

I’m Laurie, a first-time mum to my 10-month-old son, Jesse, who’s currently keeping me on my toes. I developed eczema as a young child and it’s been part of my life ever since. Over the years I progressed to stronger and stronger treatments until, at 27, I experienced severe Topical Steroid Withdrawal (TSW). It lasted around a year and completely turned my world upside down.

Before TSW, flare-ups felt relentless. The itching, burning and sleepless nights were exhausting, and they left me feeling isolated and lacking confidence. Eczema influenced everything from the clothes I wore to my holidays, exercise and mental health. I even organised my wardrobe to avoid black clothes, because they showed the skin flakes, and white clothes, because they showed the blood stains. Beige became my personality for a while. Looking back I can laugh, but at the time eczema quietly dictated so much of my life.

Thankfully my skin has healed incredibly well since then. It’s now about 99% better, and while stress is still my biggest trigger, eczema no longer controls my life. If someone had told 20-year-old me I’d one day be able to simply ignore a tiny flare, I’d never have believed them.

One of the things that frustrates me most is the idea that eczema is “just dry skin”. It’s a painful condition that can affect sleep, mental health, relationships and almost every part of daily life, and it doesn’t stop when the rash isn’t visible. There can still be pain, itching and anxiety behind the scenes, along with constant management that most people never see.

Watching Jesse go through it too

Jesse developed severe eczema the day after his 8-week vaccinations. Watching your baby scratch before he could even properly hold a toy is something I’ll never forget. Living with eczema is hard. Watching your child live with it is a completely different kind of heartbreak.

We’ve spent months, and thousands of pounds, attending appointments, managing multiple allergies and changing almost every aspect of our daily lives. My own experience of TSW made treatment decisions incredibly difficult too. I was so frightened of topical steroids that I realised I couldn’t separate my fears from what might be best for Jesse, so I handed the baton to my partner for a while, because I knew my judgement had been clouded by my own experience.

We’ve used steroid creams a number of times to help contain Jesse’s flares, and they’ve worked well for us so far. I think it’s important to say that too, because my own experience with TSW made me incredibly fearful of them, but I’ve learned that my experience isn’t necessarily Jesse’s experience.

The impact on my mental health has been enormous. I’m now on medication to manage my anxiety because of Jesse’s eczema and the toll it’s taken on our family. At one point, my body went into shock and simply wouldn’t move - something called a catatonic state. It showed me just how deeply eczema can affect an entire family, not just the person living with the condition.

One of the biggest things we initially found that helped us was an air purifier, alongside keeping him cool, dressing him in cotton and bamboo clothes, sticking to his skincare routine and avoiding his known triggers. When it’s hot, our house starts to resemble a cave, with the blinds shut and fans on full blast.

But since then, we’ve made some big changes to Jesse’s diet, and that has actually made the biggest difference to his skin. We reduced his food down to just five foods for two months, and we’ve seen around 80-90% of his eczema clear as a result. It’s funny because we’ve spent thousands of pounds on appointments, products and different things to try to help his skin, and one of the biggest changes has effectively been free: changing what we feed him. For us, it really felt like we were finally addressing something from the inside out, rather than constantly buying another product to put on the outside.

My advice to other parents would be to advocate for your baby. Listen to what professionals say and take their advice on board, but at the end of the day, you’re the one living with it. Once you shut that door at the doctor’s, you’re the one living with it every single minute of every single day. You know your baby, you see their skin constantly, and you know when something doesn’t feel right. Don’t be afraid to ask questions, seek a second opinion or keep pushing for answers.

Every child’s eczema is different, so what works for one family may not work for another. I’ve spent most of my maternity leave consumed by Jesse’s eczema, constantly worrying about his skin, introducing new foods or visiting other people’s homes. Looking back, I wish I’d allowed myself to enjoy more of the little moments instead of feeling guilty whenever I wasn’t trying to “fix” it. You’re doing your best, and that’s enough.

Running the London Marathon for Eczema UK

I’m running the London Marathon for Eczema UK because eczema has shaped so much of my life, and now it’s part of Jesse’s story too. Living with eczema gave me one perspective, but becoming a parent to a child with severe eczema has given me a completely different one. Raising money for Eczema UK feels like a way of giving something back, while helping other families feel less alone.

I actually spent years saying I’d never run a marathon, so naturally I’ve signed up for London. I ran a half marathon while pregnant with Jesse, so apparently making life harder for myself is becoming a bit of a habit. I’ll be starting marathon training at 10 months postpartum, juggling long runs around naps and hoping my pelvic floor is as committed to this challenge as I am. It’ll be tough balancing training, a baby and everyday life, but crossing that finish line will mean so much because of everything it represents.

Starting an Instagram account has introduced me to an incredible community who truly understand eczema and TSW, both from the perspective of living with it and parenting a child through it. Some of my closest friends today are people I’ve met through eczema and TSW. If you’d like to follow our journey, I share my own skin story and Jesse’s from a mum’s perspective at @laurieskinstory.

Final thoughts

You are never alone, even when eczema makes you feel like you are. Keep advocating for yourself and celebrate every small win.

After more than 20 years of living with eczema, my biggest victory wasn’t healing overnight. It was stepping out of the shower and realising my skin didn’t sting anymore. It always felt like lemon juice being poured into hundreds of paper cuts all over my body. I remember thinking, “Is this what normal feels like?”

But another huge milestone for me was being able to swim again. For years, getting into a chlorinated swimming pool would usually leave my skin flaring, and swimming in the sea would sting and feel incredibly painful. Being able to swim in a pool with chlorine without immediately worrying about what it would do to my skin, and being able to swim in the sea without that same burning, was just as significant to me as being able to have a shower without pain. Four years later, I still appreciate every bit of water that doesn’t hurt.

There’s rarely a quick fix for eczema. Managing it involves constant trial and error, and what works for one person may not work for another; my son and I are proof of that. I also wish people wouldn’t automatically say, “Don’t worry, they’ll grow out of it.” They might, but when you’re in the middle of it, what you really need is compassion and someone to acknowledge how hard things are right now.

Most importantly, there is hope. Eczema can change your life, but it doesn’t have to define it. I’m proof of that, and I want Jesse to grow up knowing that too. There will be difficult days, but there will also be swimming in the sea, laughter, adventures and all the ordinary moments that make up a childhood. That’s what we’re holding onto.