#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