#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

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