Living With Eczema: The Good, The Terrible And The Itchy

I’ve had Eczema my entire life and that’s partly why I started this blog to begin with. I wanted to be able to talk about it freely, find people that understood what I was saying and dispel some of those misconceptions around it. 

In my 26 years, I’ve had some highs with my skin and a lot more lows. I’ve used a range of products and medication and treatments. I’ve spent hours hating it and only recently realised I needed to start accepting it for what it is and showing it some love.

I figured that if I’m going to be dishing out the advice and tips that I’ve picked up along the way? I better make sure my Eczema CV is up to date!

This is a long one, why not pin it for later?

Want to know more about what exactly Eczema is? Make sure to check out CC’s Ultimate Guide to Itchy Skin!

In the beginning…

Obviously, I don’t have a magic memory so I did have to ask for a bit of information from my mum on this one. Although admittedly, she was not exactly the most helpful source! 

I started with Eczema when I was around 6 months old. It began only around my elbows and the backs of my knees. These are pretty standard places for Eczema to appear. 

This is because those are the places we’re most likely to sweat. Particularly for children – because babies tend to be a little chubbier in those areas! And I can say I was probably a chubby baby (still am!).

Of course I don’t really remember much about how it was to be a baby with Eczema. From talking to my mum I know that it definitely wouldn’t have been considered severe like it is now. The doctor prescribed a moisturiser and sent us on our way.

The itch was something that I did struggle with and my parents had to put socks on my hands to stop me from itching during the night. I gave that a try as an adult but it’s way too easy to say ‘screw this!’ and pull them off.

At this time we also didn’t know about my allergies so it’s probably a safe bet that they were having some effect on my skin as well.

School Time

My Eczema remained a minor inconvenience in my life as I grew up. I can remember being in primary school and it affecting me. Especially when the school field had just been cut. Kids obviously would engage in vicious grass fights and afterwards I would find myself sneezing and itching for hours. 

In the summer was probably when I suffered with it most. Again it was only in the crooks of my elbows and the back of my knees mainly. I would itch but it didn’t really bother me too much. 

When I got to about 11 years old, my Eczema pretty much disappeared. I wasn’t having any big flare ups. Just the odd patch of dry skin that would go away again with a bit of cream.

High School Nightmare

When I started high school, my Eczema was nearly gone – or so I thought. For the first few years I didn’t have any flare ups or flaking or really bad itching. I was able to just get on with my school life like any other kid.

The only thing I really remember that would cause a flare was during cooking tech. Whenever we did baking, I would get itchy and irritated. They also only provided Fairy washing up liquid which was like acid to my sensitive skin. After each lesson my arms would be red and I would scratch them raw. 

It wasn’t until I was around 15/16 years old and exam season was coming up that my Eczema decided to make its comeback – and it came back with a bang.

During those years, I was putting a lot of stress on myself to get the best grades, to revise and to make sure I was well equipped for whatever I wanted to do next in life. Not that I knew what that was. 

This is how I realised pretty quickly that my Eczema was heavily triggered by stress. 

The full body flares began to show up and I was constantly itching. I would sit in class picking at my skin or itching my arms. I had to stop wearing makeup because my eyes would get so sore. I started everyday by covering my face in moisturiser and hoping it would have sunk in by the time I reached school. 

This only got worse as I moved from my GCSE’s to my A-Levels. 

At the time I was also struggling with my mental health. That, plus the stress of my studies meant my Eczema was in full attack mode. 

My face was constantly red and irritated or if not, it was flaking. I felt like a monster and the last thing in the world that anyone wants is to look different while they’re at school. 

Both my physical and mental health took a huge dive during those years and it really had an impact on my life. 

Because my skin was so bad, I hated wearing clothes. So I would go to classes in leggings and some old hoodie that wouldn’t irritate my skin. I’d throw my hair up in a barely brushed bun, just so it would be out of my face and wouldn’t get stuck in my cream.

I stopped caring about my studies and where I would go to uni next year. I skipped classes, showed up late and didn’t complete the work. I just couldn’t find the energy to care about any of it. My skin was bringing me down in a big way and that was all I could focus on.

Working 9 till 5

Despite completely screwing up my A-Levels and not being motivated enough to apply for any Universities, I did manage to get myself into employment. 

At first, my skin didn’t really affect my work. It was still flaring with ferocity but I had been given a new moisturiser and some steroid creams and that seemed to be working well to manage it for the time being. 

I got my first ‘real’ job as a dental receptionist and I remember being so excited. I loved the job. I was good at it, I enjoyed the role and my colleagues were great. 

Until it all went wrong. As time went on, the hydrocortisone I’d been given stopped working and my skin got bad again. I was at a loss but I did my best to try to hide it. 

I would wear long sleeves under my scrubs, even in the burning hot summer. I would discreetly scratch my legs under the desk where nobody could see. I kept my moisturiser hidden in a drawer at my desk at all times. 

I can remember it being so warm and I was wearing a long sleeved top, my scrubs and compression leggings under my trousers because my legs were weeping. I would come home every night and have to peel them away from my skin where the fabric had stuck to the wounds. My arms would be covered in blue fluff  because again the fabric of my top had stuck to the oozing skin.

My skin was quickly getting on top of me and I had no idea how to stop it. I did what I normally do and just ignored it, hoping it would go away. Applying more and more moisturiser and steroids and getting less and less results.

Due to the intense itching I would get during the night, I often didn’t get to sleep until the early hours of the morning. Then I would be late getting to work and I didn’t know how to explain it to my bosses. 

How would anyone understand that you were late as you didn’t sleep because you were scratching all night? It seemed ridiculous. 

Again, it began to have an affect on my mental health and I soon found myself in a black hole. I lost the job and I was at one of the lowest points of my life.

You can read more about how having Eczema can impact your mental health in my post 5 Ways Eczema Can Affect Your Mental Health.

Dermatology

Around this time, I was dragged to the doctors by my concerned mother and I got referred to Dermatology in 2017.

They then suggested I give UVB Light Therapy a try. They also prescribed me a new steroid cream to try. I’d never heard of light therapy before so I was interested to see if this would be my saving grace. 

I attended Pindersfield Dermatology department three times a week for about six weeks. There I would get into what was essentially a superpowered tanning machine and let it work its magic on my skin. 

When you have UVB Light Therapy, because of how strong the light is you can only stay in the machine for a very short amount of time and you build it up over the sessions. I started at just 15 seconds and built it up to around 1 minute and 30 seconds. 

At first, I think I convinced myself I was seeing results. I was sure that my skin wasn’t as red or inflamed. Even though the itch remained, it seemed like the wounds were healing a little. I was still very flaky though.

But when I reached the end of my treatment, I felt a little deflated. It hadn’t been the magic cure I’d been hoping for and I was still struggling with how to control my Eczema. 

After the light therapy, I went back to the dermatologist to ask what came next. 

I was given Diprobase to use as an emollient (despite me telling them multiple times it burned my skin), Eumovate and then Betnovate steroid ointments and an antihistamine to help me sleep. 

I was told that was all that could be done for me and I was discharged from Dermatology.

Grin and bear it

So for the next 7 years of my life I had to make my own way. I simply had to get on with my life and manage my Eczema as best I could.

There didn’t seem to be any reprieve in all that time. It was a constant cycle of flares, minor healing, flares and crying, accepting, crying, and I was just plain fed up.

My skin was constantly fluctuating between being bright red or patchy. It would sometimes be raised rashes and other times just an insatiable itch that would drive me insane. 

I had a permanent spattering of scabs and open wounds on my legs. They never fully healed because I would just scratch them open again. I developed scarring on my hands, breasts, legs and feet from where there had been long term wounds.

Probably the most frustrating of them all was my face. It’s near enough unavoidable for people to see your face. So when it’s red and blotchy and there are flakes everywhere and your lips are cracking at the edges and you just know how it looks – you want to hide away from the world. 

If I did go out, I would make sure to put as much moisturiser as I could get away with on my face to try and hide the mess. I went against all my instincts and would try a bit of makeup every now and then. (Speaking from experience – don’t do it, it’s really not worth it!)

Every time I passed a mirror I would be checking my face. Can they see any flakes? Have I got even more red? Does it look bad?

Even when I wasn’t at a mirror, I would be trying to look at my reflection on the screen of my phone to make sure all traces of my Eczema were hidden away. 

This is something I’m still very guilty of now and depending who I’m out with, I’m always asking them ‘is my face okay?’.

The Power of Social Media

In the last two years, my Eczema reached an all time high on the disaster level. I had a flare that never wanted to end. It had gotten to the point where I was applying my creams and steroid ointments every day. I’d found that if I didn’t then I would be pretty much unable to function the next day.

My sleep schedule became non-existent as I was up most nights scratching or tending to my sore skin. I was constantly tired, fed up and feeling down. I didn’t want to go out so I put off a lot of social opportunities and the excuse ‘I can’t, my skin is bad’ had become an automatic response.

Within those two years, I was diagnosed with Coeliac Disease. This led to me doing some intense research (mainly out of fear of what I couldn’t eat anymore). I came across the term ‘dermatitis herpetiformis’. 

Basically it’s a rash that can occur for people with Coeliac Disease when they ingest gluten. It got me thinking, could this be making my skin worse? Is this why my flare isn’t going away? 

With this in mind, I waited patiently and hoped that by starting my new gluten free lifestyle my skin would start to show some improvement. 

I think this may have been wishful thinking on my part. Despite cutting out the gluten, my skin was still suffering and I had to accept that I couldn’t blame it purely on having Coeliac Disease.

However, while doing my Coeliac research, I decided to also have a look a bit more into Eczema. I’d always considered it as something that was just a part of my life that I had to get on with but I hadn’t actually looked into it all that much. 

That’s when I started my Instagram account (@theitchycoeliac). I was blown away and strangely comforted when I found a whole community of people that were going through the same things I was. 

It prompted me to start looking at my skin in a different way. To actually start listening to it and looking into why it reacted the way it did. I became more choosy about the products I was using and looked into more Eczema friendly options for clothes, bedsheets, and everyday choices. 

Along the way, I naturally came across people that were going through what is known as ‘Topical Steroid Withdrawal’. I saw their pictures and read about their experiences and really felt for them. But I wasn’t going through that. Sure, I used steroid creams but they were working and I was fine. 

Wasn’t I?

The Final Stage: Acceptance

In the past couple of weeks I’ve had to accept some hard truths – and they’ve been a very bitter pill to swallow.

Due to a big flare up of my skin, I’ve been off work for almost an entire month now. It seemed like no matter what I did I just couldn’t get a handle on my Eczema. The steroid creams weren’t working anymore no matter how often I applied them.

I went to see my GP and was given some antibiotics and a course of oral Prednisolone (a steroid treatment). In the week that I was taking them, my skin cleared up and I thought I was finally on the mend.

And then they ended. And my skin came back ten times worse than it had been just a week before.

All of a sudden, my skin was on fire. My face swelled and I could barely open my eyes. Everywhere itched like I was being eaten alive by a million tiny bugs. I forgot entirely what sleep was as I was up all night, walking around in circles because I just couldn’t get comfortable no matter what I did. Clothes became my own personal hell. Everything that touched my skin felt like sandpaper. I was flaking so much my flat was starting to look like a bad snow week in December. 

I knew in my heart, this was not just a normal Eczema flare. I’d been suffering with them almost my whole life and this was just too intense. 

Once again, I took to Instagram and Facebook groups to see if there was anyone else that had experienced what I was going through. 

There were lots of people – all going through Topical Steroid Withdrawal. 

So one night when I knew sleep was a distant dream, I sat at my laptop and did as much research as I could. Eventually, I had to stop lying to myself and accept the fact that I was going through TSW.

It was a devastating blow as TSW can be a seriously debilitating condition and turn your entire life upside down. I had to think about the real impact it could have on my personal life, work life, social life.

If you want to know more about TSW, have a read of my post What Is Topical Steroid Withdrawal?

Where I’m at now

So last week I had my first Dermatology appointment in seven years. It went about as expected but I think it was at least a little helpful.

When I mentioned TSW, the dermatologist laughed and immediately shot me down (‘I don’t think that even exists’). This was less than encouraging. She also was rather upset with me as I’d begun to try Moisture Withdrawal Treatment.

I’ve stopped using any kinds of creams on my skin – steroid or emollient – in an effort to dry my skin out and give it the chance to heal and start producing its own stuff to improve my skin barrier. 

She told me this was the worst thing to do and that I should be covering my whole body in moisturiser AT LEAST five times a day. 

Because we all have the time and facilities to do that with a full time job, don’t we?

Although she is the dermatologist and hypothetically she should know best, I’m reluctant to take her advice. So far from doing MW for just over three weeks, I’ve noticed a difference in my skin. It’s not as red and inflamed and my open wounds seem to be healing more effectively. 

I was prescribed Cyclosporine which is an immunosuppressant to try and help alleviate the symptoms so that I would be able to actually get back to my life. While there are definitely risks associated with this kind of medication, I was willing to give it a try over using more steroids. 

I’ve only been using them for about a week so I’m looking forward to seeing what results it might bring. 

I’m well aware that I’m at the beginning of a long road to healing my skin from the damage that I’ve unknowingly done to it over the years. Unfortunately, both Eczema and TSW are not conditions that come with magic cures or short term healing. You just have to take it as it comes and get through it as best you can. 

I feel much better now that I’m armed with knowledge and a community that I didn’t have before. Having that backing can make you feel more prepared, physically and mentally to take on the challenge of a skin condition.

So, I hope this has given a better idea of my own personal Eczema journey. Also, a better idea of why I decided to start this blog in the first place. 

With a lifetime of Eczema experience, I wanted to share some of that and hopefully help others that are struggling like I have. 

This one has been a bit of a long one but I hope it’s an interesting one! If you’re going through your own Eczema journey at the moment, leave a comment down below. I’d love to hear how you’re doing. 

Feel free to go follow me on Instagram where I post regular updates on my skin. You’ll also find a whole load of people that I follow who are also going through the Eczema/TSW life so make sure to check them out as well!

And if you have made it to the end of this one, thanks for listening.

CC x

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