#ThisIsNotEczema - notes from the first ever TSW Town Hall Meeting

 

Some of you might look at the title of this post and think whhhhaaaat!? 

I shall explain. 

For those of you who weren't aware, last night, the first ever TSW Town Hall Meeting took place. It is something I have wanted to do for a long time now, and after everything that's happened over the last few weeks with Dr. Sandra Lee, aka Dr. Pimple Popper, I felt the time had come to make it happen, and thankfully after speaking with Briana (@preventable_doc), Amy (@tsw_avt), Heba (@hibhib_haboya), Linette (@linettero), Sean (@tsw_seandillnutt) and Rakhi (@gut.skin.nutritionist), they all agreed. Essentially, there were a few points that I believed we needed to address and discuss as a community in order to hopefully reach as many people as possible and get our condition, and the dangers of these drugs, out there. 

The four pre-arranged points to discuss were:

1. How eczema is used to describe skin that is actually 'steroid addicted'.
2. A definitive name for our condition which is both inclusive and medically accurate.
3. Continue using the term, 'Topical Steroid Withdrawal' to describe the process?
4. Hashtags used on Instagram.

Below is the outcome of each point raised in the meeting, in more detail. 

1) How eczema is used to describe skin that is actually 'steroid addicted'.

This is something I'd seen a lot of on Instagram and Facebook, and for a while after I'd recovered, I was certainly guilty of calling my skin 'eczema' when it wasn't to describe rashes or my skin generally during withdrawal. I felt that by all of us continuing to use 'eczema' in posts etc., any medical professionals or people that think they might have our condition, would be confused and think what we have is just chronic eczema. I will go into more detail in point four that covers hashtags, but one of the most exciting decisions we made last night was in deciding to use the hashtag #ThisIsNotEczema that will be put into our bios and also added to the beginning of each post on our skin to show someone new coming to our posts, before they have even read anything, that #ThisIsNotEczema. I have known about this hashtag for a while now, and loved the simplicity of it, getting straight to the point. It was created by Louise & Holly from the fabulous Scratch That (here) and I cannot wait to see it start to appear in our posts and on our profiles.

2) A definitive name for our condition which is both inclusive and medically accurate.

Something everyone was definitely on board with from the moment the point was raised. To my knowledge, we currently have not only one, but THREE names for our condition in circulation: 'Red Skin Syndrome', 'Topical Steroid Addiction', and, 'Topical Steroid Withdrawal Syndrome'. For a very long time, most of us used the term, 'Red Skin Syndrome', until earlier this year when Louise shared a post (here) that very much hit home just how wrong it was. I was quite heartbroken to be honest that I'd used it for so long without considering how exclusive it was and not factoring in someone's skin colour. Oddly, I had already found myself not using the term for quite some time, but when Louise shared her post, I immediately started using Topical Steroid Addiction, which I still use and have updated everywhere, including in my book(s). I will never use Red Skin Syndrome again, and the general consensus from everyone at the meeting last night was the same. In response to Louise's concerns, ITSAN also created the term, 'Topical Steroid Withdrawal Syndrome', which brought the total names used to three. 

I felt that by having three names, we were adding to the overall confusion and noise currently surrounding our condition. I believe that we need to streamline everything and make all the information around it much clearer. And so, as a community – as none of us liked any of the names we currently have anyway – we will be creating a completely NEW one. One that everyone feels best represents us as a community, and can also be taken seriously by medical professionals etc. Later on today (Monday), I will be uploading a post to my Instagram account (here) in order for everyone to leave all suggestions for a potential new name for our condition. We are looking at having all names put forward over the next two weeks and then, as a community, we will choose one from the selection that we will use exclusively going forward. How very exciting! 

3) Continue using the term 'Topical Steroid Withdrawal' to describe the process? 

'Topical Steroid Withdrawal' is the term that is synonymous with our condition and the name pretty much all of us use on a daily basis. It is so deeply entrenched in our community, and even our Instagram names – hell, it's in the name of my blog – but it's always bothered me seeing as some of us (including myself) used other steroid-based drugs like orals and eye drops etc. and became addicted, so the name 'Topical Steroid Withdrawal' doesn't actually make sense ... on top of the fact that I also believe it is confusing as 'Topical Steroid Withdrawal' encompasses ALL steroids. 

After talking about this at the meeting last night, most felt that, at this stage, it was probably too much a part of our condition now to change it, but it is something we will definitely continue to discuss and look at ways around as a community. It isn't over basically.

4) Hashtags used on Instagram.

This wasn't a point I'd originally thought of and was one put forward by Briana, Amy, Heba, Linette, Sean and Rakhi. Last night, we discussed which hashtags would serve us best in order get our condition out there. FABULOUSLY, we actually had a digital marketer (Holly) who was coincidentally part of the meeting and shared that it is better to have less hashtags (around ten) which are more tailored to us, rather than using thirty more general ones. After discussing the best hashtags to use, we decided on nine to trial on our posts from now on. They are:

#thisisnoteczema (as previously discussed)

#tsw

#topicalsteroidwithdrawal

#eczema

#dermatology

#skincare

#skin

#skinhealth

#eczemarelief 

We will also be adding one or two to the list when we decide, as a community, on a name for our condition, with few other hashtags added to our posts if we are discussing something specific to the post, i.e. Anxiety.

– Meeting adjourned –

I genuinely don't think I have been as excited about the future of our condition as I was last night. The last few weeks have shown just what we are capable of when we work together, and by implementing these changes, and continuing the conversation, I feel like we could really get somewhere and stop anyone else from suffering like we have. 

One day, step by step, little by little, we will get there.

Thanks to Linette & Sean for hosting it.

What a wonderful community this is and I couldn't be more proud to be part of it.

Cara x

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Heat rash? No problem

I have waited until now to share that recently I had a little bit of a blip with my skin. Nothing to do with TSW, but through wanting to keep my journey as accurate and honest as possible, I felt it was only right to document my experience anyway, both for myself and in a bid to keep a medical journal of sorts as I still kick myself for not doing it through withdrawal. Back in early August, the UK experienced a heat wave, which decided to outstay its welcome.

I love hot weather, my skin LOVES  hot weather ... but not that hot, and after a few days, my skin let me know exactly how much it hated it. Most people associate the UK with umbrellas and mild summers and our heat waves tend to usually last a day or so before going back down to more manageable temperatures - but not this time, and we were treated to over a week of very hot weather that we just weren't used to. Below is a detailed journey of exactly happened - and don't worry, I'm completely fine now.

From left to right: Pic 1 & 2 of the top of my right leg // Pic 3 of my left ankle.
All taken on Tuesday 11th August.

Top pic: right side of torso.
Bottom pic: left ankle.
Both taken on 13th August.

Around the weekend of the 8/9th August, the temperatures in the UK suddenly shot up, hitting record temperatures, and for the first few days, my skin was totally fine, until around Tuesday (11th), when the tops of my legs, my torso and left ankle started to feel a little irritated and lumpy. There was also a faint redness in those areas, and by the following morning, I was very uncomfortable. My skin was sore and very itchy and symptoms had spread to my back. I remember the following evening (Wednesday 12th) it got to the point where my back felt very sore when it came into contact with anything. After years of next to no irritation whatsoever, it was bizarre to be frantically scratching at my skin again ... and okay, this is where it gets a little strange. If I'm being honest, I quite enjoyed the novel experience of scratching at my skin again - as if I was a smoker, having one last drag, for old times sake. It was a pleasure, and I found myself scratching, even when it wasn't that itchy and I could have got away without doing it. A rebellion of sorts.

By Thursday (13th), when I went out for a long walk late morning time, I had to rush back home so I could get into the shower, feeling that prickly irritation and stinging you get when sweat comes into contact with affected skin.

On Friday (14th), I noticed the top of my left arm become slightly lumpy and irritated, although symptoms were mild. Other areas were still irritated, but less so as the temperature outside finally cooled. It was still very muggy though with thick, hot air.

From left to right: right side of my torso, left arm and left ankle.
All taken on 15th August.

The right side of my torso.
Taken on 18th August.

On Saturday (15th), all affected areas of my skin began to dry up, and whilst symptoms were still there a bit, I was able to go out for a long walk in the afternoon with next to no irritation. I got home and had a shower, but that was because I'd been on a long walk and nothing to do with any irritation.

My skin continued to calm down the following day, but on Monday (17th), even though the weather was cooling down, I felt my skin start to get irritated again and on my walk back from getting food shopping, the skin on my torso especially was prickling and irritated. It calmed down slightly when I had a shower, but over the day, it wasn't pleasant and still uncomfortable. I think as my skin was trying to dry out the rash, it tightened and that made the discomfort greater. On Tuesday (18th), it was a little better and the rashes continued to dry out, although they were still slightly irritated. Over the whole period, it also felt as if there was fluid/water in my body - like it was when I had oedema through TSW, but certainly not as severe (NOTHING comes close to the symptoms you experience through withdrawal).

Both sides of my torso.
Taken on 20th August.

On Wednesday (19th), I noticed the lumps on my arms had dried up and were pretty much gone, then on Thursday (20th), there was a drastic improvement everywhere else, especially on the sides of my stomach. The skin was all flaky and dry in that lovely way that you know new clear skin is waiting to come out underneath. Promise. It's delicious.

The top of my left arm.
Taken on 21st August.

On Friday (22nd), all the rashes were practically gone, I had absolutely no irritation, and just some faint raised dryness on my stomach and legs that the camera wouldn't pick up.

After that, I completely forgot to document what happened as there was nothing to say or photograph.

I took the odd antihistamine along the way, but to be honest, I didn't find them that effective, so I stopped taking them and let the body do what it needed to do - and I got better regardless.

I believe my body basically had a breakdown, not used to the consistently high temperatures, and I had both water retention and heat rash.

Again, the rash feels as if it never happened and I have smooth, clear skin again with absolutely no irritation.

My left ankle.
Taken on 24th August. 

The most positive thing about this heat rash was that my anxiety was completely fine and I really did embrace it without fear. Don't get me wrong, at the time it was very unpleasant, but in an odd way, I felt grateful for it, as I realised how far me and my mind had come. I have definitely healed mentally from TSW. I am now a person with normal skin that had a pretty bad heat rash – that's all. I may have this crazy history, but my skin is no longer my life, like it was for so many years.

I waited until now to tell you about it, when my skin had completely recovered, as I acknowledge my position in this community and how any kind of change to my skin might affect someone in the throes of withdrawal. Anxiety both during and after TSW can be terrible, and I don't want to add to it, but one thing I will NEVER do is lie or filter my journey, because that is not fair to you or me.

I hope my recent experience doesn't upset anyone, but I'd like you to use this post to remember that after TSW, you aren't suddenly made of porcelain, untouched by triggers that would affect a lot of people, regardless of their skin history. I had heat rash because it was very hot and I wasn't used to it. It might have been exacerbated because of what I went through in the past, but who the hell knows - all you need to know now is that I'm fine, my skin is better than ever, and I was only reacting as many people would.

It really does get better, both mentally and physically, but please try to factor in the mental side of this journey, because it is the part which tends to stick around much longer than you expect. Something might looked healed on the outside, but that might just be the beginning. Be kind to yourself, give yourself time to recover from this terrible ordeal you've had to go through and one day it will give you the tools to deal with ANYTHING life throws at you.

What heat rash?
x

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5 QUESTIONS WITH: Hayley

I am so excited to be back with another 5 QUESTIONS WITH, and this time it is with the lovely Hayley from the Instagram account, @tswdailywithhayley. I have been Instagram friends with Hayley since early 2019 when she began her journey through TSW. She has now made a full recovery and I have been amazed by her kindness and positive attitude along the way - it's so inspiring.

With that being said, I'll hand it over to Hayley:

1) Tell us a little bit about yourself and your skin journey.
My name is Hayley and I am 23! I am studying speech pathology, I love to travel and I live in Australia. I have had eczema since I was a child. My skin was at its worst when I was about 5 years old, when I had a bout of chicken pox that sent my eczema into a massive flare. Mum took me to the doctor, who prescribed very mild steroid cream for a short period of time. That was the only time I was exposed to steroids during my childhood. Around that time, Mum also took me to a naturopath who helped us manage my skin naturally through lifestyle and diet changes. For me, avoiding environmental and dietary triggers, and maintaining optimal nutrition was an effective way to manage my skin – and that’s how I did it for the next 15 years of my life. When I turned 20, I experienced a high amount of stress and my eczema flared up. At that point, I started using mild over-the-counter steroid cream on my hands, but eventually went to the doctor for relief because it wasn’t improving. I was prescribed a highly potent steroid cream, to be used for two weeks at a time. This worked for a while, but after each two-week round of using the cream, my skin got worse. I eventually had to go back to the doctor. I was then told to use it as often as I needed. The cream was effective in relieving my eczema – but only on the day I applied it. I noticed that my skin would erupt a day or two after I applied the cream, and each eruption was worse, and spread even further across my body, to places I’d never had eczema previously. I began to try other methods to clear my skin – clean diet, celery juice, naturopathy, nothing worked, and I was getting worse. I was devastated. Eczema had always been a part of me, but it never held me back from anything; I’d always been able to play sport, swim, travel, and wash my hands and body normally. My skin was out of control and I felt hopeless. Eventually I found my answer through Instagram. When I was searching for other people managing their eczema naturally, I found Cara Ward and Louise King, who had shared their story of topical steroid withdrawal. The symptoms they described were exactly the same as mine. I knew this was what was happening with me too. I gave up all steroids on February 17th, 2019 and what followed was about 11 months of an intense withdrawal.

Hayley during TSW

2) How did you find out about TSW?
When I was looking for ways to manage what I thought was severe eczema, I noticed some Instagram profiles that were describing “topical steroid withdrawal”. At first, I didn’t actually think I was going through tsw, like Cara and Louise had/were. I respected them and empathised with them, but I thought since I’d only used steroids as the doctor had instructed for a few months (eight, to be exact), surely, I wouldn’t have to go through that…turns out that’s exactly how topical steroid addiction starts – by following medical advice. There was a day when I had to go back to the doctor to get a medical note (to take time off university and work; something I’d never had to do for eczema before) and described my worsening skin to them. They offered more steroid cream, oral steroids and mentioned that steroid injections might be a course of action in the future. It was ridiculous. For 20 years of my life, I had never relied on medication. I knew I had a choice to make. I would have to live taking steroids for the rest of my life, or I would have to suffer for a while, hoping that I would get better. It dawned on me that whether I liked it or not, and despite the short length of usage, I had to go through a withdrawal too. As much as I couldn’t believe it, I felt sure I’d found the answer. I’d seen that people like Cara had made it through and I would too.

3) Did you find that anything aided your healing?
Nothing was miraculous. I still went to a naturopath while I was going through tsw. I don’t think this was a cure, but I think it was a supportive of my nutrition, mental health and helped reduce inflammation within my body while my skin went through withdrawal. In my first month of withdrawal, I found long baths comfortable, but eventually I found moisturiser withdrawal more helpful – I stopped showering, bathing an applying moisturiser in the second or third month of withdrawal. At first, I felt tight, sore and gross, but after a couple of weeks I started to feel more comfortable. My mum and sister washed my hair once every few weeks, and I cleaned my fingers, armpits and other areas that needed it with antibacterial wipes in place of hand washing and showering (sounds gross, but it was the way I managed for about 5 months). Again, I can’t say that moisturiser withdrawal actually helped, or if it coincided with healing that would have happened anyway. After doing moisturiser withdrawal for 4-5 months, I thought a few products helped me continue healing; hyaluronic acid, jojoba oil, paw paw ointment. I don’t claim that these products were miraculous, but they made me feel more comfortable as I continued to heal and could tolerate more products. I found the sun highly irritating and made my skin more oozy, so I stayed away from it and covered up with hats, scarves and long sleeves if I went out.

The most helpful thing for my withdrawal was letting my friends and family know what was happening, accepting that I had to take time to rest, and allowing myself to be what the world would describe as unproductive. I stayed home as much as I could (quit work, and withdrew from university), and rested all day every day for about 5 months. I know this is not possible for everyone. I still lived at home with my parents during tsw, and they were absolutely amazing to me. I am ever grateful. It was challenging to accept support at times, but it was the best thing to do. Accepting the support of friends and family can be strange when you’re used to being independent, but it’s definitely a good thing during tsw, if you can. I watched endless hours of Netflix, listened to meditations, sat in the same room as my family at night (even if I couldn’t move), and spent a lot of hours on Instagram talking to others going through tsw. Honestly, those were the only things I could physically and mentally handle; I didn’t have much of a choice. Instagram was like therapy for me – I found so much hope reading the stories of others. I am in awe of the people in the tsw community. There were several ladies going through tsw at the same time as me, some are now healed, some are still in the process, but going through tough days knowing I wasn’t alone was really special.

Hayley now!

4) Sum up TSW in five words.

Painful. 

Burning. 

Paralysing. 

Renewing. 

Releasing.

5) What positives, if any, have you found from going through TSW?
I feel a lot more resilient. I don’t think I realised it before, but I was quite a tense perfectionist prior to tsw. If I couldn’t do something perfectly, I didn’t want to do it. I would often give up on things if it didn’t go exactly to plan. Having absolutely no control over my skin was such an uncomfortable thing, physically and mentally during tsw. My skin literally fell off all over the place and I left a trail of flakes behind me that drove me mad. I couldn’t make plans because I didn’t know how long it would take to heal. I had no control and I had to let it be. I had to be kind to myself. There were some days when I thought I would die, and some when I wanted to. Being that down is definitely not fun, but I learned to get through the days. I learned to lean on others, and on my faith. I learned to appreciate the small things, like reading a book in front of a fire, or a cup of tea with mum. I was blessed by friends who visited me, saw me and loved me during tsw. It still makes me emotional to think that my friends and family actually do love me for me, not my looks. It’s such a unique experience to go through, and I’m grateful to have the friends I do, and I now love them at a deeper level than I thought possible. While I was in tsw, I read about other people’s resilience in life – I read The Diary of Anne Frank, The Whitest Flower (about the Irish Potato Famine), and other historical novels. I also read about people who have other skin conditions like burns, Harlequin Icthyosis, and others. I thought, if they can face that, I could face this. I was going to heal, and I held onto that. Gratitude grew. Ambition diminished. I now have a lot less ambition, and I don’t think that is a bad thing at all. I am still driven, but I know that things will happen as they’re meant to and I can’t control most things. It does cross my mind, especially as I complete my final year of university, that “I can do this. It doesn’t have to be perfect. I’ve been through tsw. I can get through this day.” I’m grateful for the resilience that has grown in me.

Life and health is a gift. People really do suffer in this life. I can now, like I was never able to before, in a small way relate to other humans who are suffering. Becoming acquainted with suffering and realising that I am mortal has been a blessing. It has brought me deeper into hope as a Christian. Deeper into trusting that there is a plan for restoration for all people. Our story is not over while we’re alive, and especially not over because Christ is alive. I hope and pray that anyone going through tsw finds hope in a future that is bright, but that there is also strength of today.

1 Peter 2:24-25 (Passion Translation)

24 He himself carried our sins in his body on the cross so that we would be dead to sin and live for righteousness. Our instant healing flowed from his wounding. 25 You were like sheep that continually wandered away, but now you have returned to the true Shepherd of your lives—the kind Guardian who lovingly watches over your souls.

To follow Hayley's inspiring Instagram account, click (here).

Thank you so much Hayley  <3

Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)
Nina Sloan (here)
Nick @Eczemacism (here)
Stephanie & Isaiah Quinn (here)
Stephanie @TheItchyConundrum (here)
Josh @Redskinrecoverydiary (here)
Briana @PREVENTABLE (here)
Melanie Lynch (here)
Stephanie Miller (here)
Holly Dillon @GetYourSkinOut (here)
Me (here)
Keisha Gregson (here)
Douglas Maddy & Charlie (here)
Gillian Breslin (here)
Jasmine and Jennifer (here)
Robyn (here)
Brittany Hallberg (here)
Emma (here)
Zip (here)
Imogen (here)

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ADVICE FROM A SELF-CONFESSED MESS

Last November, I began writing a book that I am so excited to be able to share is out today! STUFF I'LL TELL YOU TO DO THAT I WON'T DO MYSELF: ADVICE FROM A SELF-CONFESSED MESS is available as an eBook and paperback ... and I suppose the title pretty much says exactly what it's about - but I'll let the blurb take care of the rest:


Part self-help book, part memoir … with a twist.

Cara takes you through the events that have shaped her life – from a skin condition which left her housebound and compulsions that made her feel mentally isolated, to her struggles to communicate after trauma and her battle with anxiety. It includes some observations on life and the lessons she has learned from pain – but whether she takes her own advice is another story ...

This book covers:
~ Anxiety
~ Disordered eating
~ The destructive nature of fear
~ Comparison in the age of social media
~ Identity
~ A new take on shyness
~ Dating
~ Growing up with red hair
~ Transformation
~ Panicking
~ Chronic skin conditions
~ Trichotillomania and dermatillomania
~ An (OVER) organised mind
… and much more.

It is broken up into two parts, with the first part written in late 2019, and the second during the summer of 2020 after the events that made this year what it is and how it affected one thirty-something woman trying to navigate it all.

She is not an expert on life – she is a mess.

***

I think it's safe to say that I wouldn't have been able to write this book without going through TSW. Some of the most important lessons I've learned were because of that life-changing process, but this doesn't mean I believe I am an expert on life now and have got all the answers - I don't. This is a book about being human, the mistakes we make and (try to) learn from.

If this is something you are interested in, the links to buy my book are below:

UK
eBook (here)
Paperback (here)

US
eBook (here)
Paperback (here)

Canada
eBook (here)
Paperback (here)

Australia
eBook (here)

Germany
eBook (here)
Paperback (here)

France
eBook (here)
Paperback (here)

India
eBook (here)

Spain
eBook (here)
Paperback (here)

Italy
eBook (here)
Paperback (here)

Netherlands
eBook (here)

Japan
eBook (here)
Paperback (here)

Brazil
eBook (here)

Mexico
eBook (here)

***If you are unable to get it in your country, please email me at tswcara@hotmail.com for an alternative method.***

With all that being said, please don't feel under any pressure to buy my book if it will cause you any kind of financial strain. If you do read it, I really hope you like it and it makes you not feel so alone, because you're not.

Love always,
Cara x

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Seven Years

Today marks seven years since I stopped using topical steroids and completely changed my life.

If I’m being honest, I really don’t feel like celebrating today as there are far more important skin battles going on in the world right now, and my thoughts go to anyone who has had to fight for their skin, in one way or another.

Here’s to spreading awareness for causes and conditions that should never have been allowed to happen in the first place.

If you are struggling right now, it gets better. If you are doubting right now, it’s part of it. If you are looking for a miracle right now, it’s time x

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5 QUESTIONS WITH: Imogen

In the midst of all this anxiety and fear our lovely world is currently experiencing, I thought I'd share something positive with a return to my 5 QUESTIONS WITH series, offering a little reminder that things do get better <3

Today, I am excited to bring you Imogen's story. Imogen and I have been friends on Instagram since November 2016 when she began posting about her battle with TSW (her fantastic account can be found *here*). I followed her journey through the terrible symptoms of withdrawal to her eventual recovery around eighteen months later! Now, her skin is absolutely beautiful and I couldn't be happier for her.

Without further ado, I'll hand it over to Imogen:

1) Tell us a little bit about yourself and your skin journey.

Imogen during withdrawal (2017)

I suffered from extreme eczema as a baby on my body and face. I recall seeing pictures of me as an infant with horrendously raw cheeks and my family all reminiscing about how awful it was. My poor mum was at her wits end and would cover me in emollient creams, tubular bandages and occasionally topical steroid creams although this was rarely. I was very allergic and reactive to environmental factors as a child as well as being mildly asthmatic. I remember not being able to go near an animal because they would cause a flare. Every winter, every summer and every family holiday abroad would bring on a flare of some kind and I would have to lather myself with creams to try to stop myself tearing at my skin. This went on for most of my childhood, however teenage years brought some relief and it seemed I had ‘grown out’ of my severe allergies and eczema although certain environments (dust, horsehair) would still induce a flare up. At the age of 19, I moved out of my family home while at the same time securing a job on a farm. Almost instantly, my eczema came back, mostly on my legs and arms. The next two years was a whirlwind of changing jobs and using steroid creams prescribed until I was absolutely covered in red, burning discoid eczema (something I now believe may have actually been the start of TSW). I saw dermatologists and GPs who eventually gave me Fucidin, a steroid-antibiotic mix. I was only meant to use this cream for ten days on my face, I used it for over 365 days. Every time I used it, I would have some relief however the next day, the weeping, raw skin would be back with a vengeance. The next step according to the doctors was to give me prednisone. I wholeheartedly did not want to take it and so I was stuck in limbo until I found ITSAN. I then went through TSW from October 2016 up until around April 2018. I now consider myself to be fully healed and I no long suffer from eczema. My allergies are virtually non-existent, and I have even been able to regularly horse ride in the time since my TSW. Before TSW, being anywhere near a horse would have caused a severe flare up and a tight wheezy chest. This leads me to believe that steroid creams were making my allergies and asthma worse…. All-in-all, there is life after TSW!

During TSW.

2) How did you find out about TSW?
I actually had a friend who had been through TSW the year before. I didn’t know much about it at the time she was going through it but when she found out I was relying so heavily on topical steroids, she pointed me in the direction of the ITSAN website and explained to me what could be going on. At first, I was terrified reading about other people’s experiences and hearing all their stories of TSW. How could someone put their body through this, they must be crazy right? The question that kept popping into my mind was “Can I really do this?”. However, I knew these steroid creams were poisoning me and the only options left were to stop using them or go down the route of stronger steroid medications. Something had to change and knowing that other people had gone through TSW before me and were going through it at the same time, gave me the encouragement that I needed to throw away the steroid creams. I’ve never been more certain of a right decision. That moment was life-changing.

3) Did you find that anything aided your healing?

Now I’m going to use every TSW-ers most hated phrase but, time is the best healer. It takes a lot of patience, but you have to trust your body knows how to heal itself. Having said this, there are things you can do to help it along. I found that for me, the biggest turning point was when I moved back home. I was suddenly in a much cleaner environment; I was able to eat healthier and be completely focused on myself and my healing. Less stress, more comfort. I would apply apple cider vinegar diluted in water twice a day to anywhere raw and oozing. I would also bathe in Milton bleach diluted baths three times a week. These were painful but did reduce the inflammation. Mentally, I found that giving into the pain and crying helped. It was a release for me, and it gave me an indicator of when I needed to stop for a minute and self-comfort. Connecting with others through Instagram was a big relief for those moments of anxiety and also using Instagram as a photo diary was a great way to track my healing as well as sharing experiences with fellow TSW warriors.

During TSW.

4) Sum up TSW in five words.
Exhausting. Raw. Shocking. Brave. Immense.

Imogen now!

5) What positives, if any, have you found from going through TSW?
No matter how hard this TSW has been, there are certainly some positives that have come from it. I have a renewed sense of self worth and will never take my health, mental or physical, for granted again. I feel a sense of connection with my body and have learnt to listen to it if something doesn’t feel right. All the knowledge I obtained about my skin and the way my body heals, I can now use to help others going through something similar which is very rewarding. This journey has inspired me to help others and I’m now studying at university to become a dietitian to helps others understand the importance of healing their bodies through other means, not just medications. Above all, it made me realise my own strength and determination. I feel as though I’ve been through hell and come out with a fire inside that wasn’t there before. I now also don't have eczema at all since going through 18 -24 months of TSW and all of my allergies have cleared! 

To follow Imogen's very inspiring Instagram account, click (here).

Thank you so much Imogen  <3

Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)
Nina Sloan (here)
Nick @Eczemacism (here)
Stephanie & Isaiah Quinn (here)
Stephanie @TheItchyConundrum (here)
Josh @Redskinrecoverydiary (here)
Briana @PREVENTABLE (here)
Melanie Lynch (here)
Stephanie Miller (here)
Holly Dillon @GetYourSkinOut (here)
Me (here)
Keisha Gregson (here)
Douglas Maddy & Charlie (here)
Gillian Breslin (here)
Jasmine and Jennifer (here)
Robyn (here)
Brittany Hallberg (here)
Emma (here)
Zip (here)

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