Hello all!
Hope you are doing well and things are looking up after tonight’s announcement!
Quick post on topical steroids as treatment for eczema and topical steroid withdrawal. I have in my other posts explained my steroid use from many years ago, and I have always kept my blog and instagram ‘holistic wellness’ focused rather than engaging in specific medical discussions. I believe each person should make their own decisions when it comes to their health. But I also recognise that I should touch on TSW as it’s a very important topic and clearly, looking back, I am able to see I did go through the motions of TSW. I’m glad at the time it wasn’t what I based my healing on, though.
Background
I’ve always had skin struggles, eczema, rosacea, acne, sensitivity. You name it, I’ve had it!
In 2014-2016 I had started a new graduate job, new relationship, new house, lots of new stress and lacking control. My skin took a downturn and I can’t remember the specifics of when I used steroids (I had used over the counter hydrocortisone before that), but I started to use steroids more and more with increasing potency.
I stopped applying steroids in Oct/Nov 2016 as I felt that my skin was just getting worse. I’d vaguely seen TSW online but tried not to look as I found it scary and overwhelming. I tried Chinese herbal medicine, elimination diet, phototherapy but my skin did not respond well and my personal life became more and more difficult. The phototherapy burned a layer of skin off and then my skin spiralled much worse and was infected. It was three months of hell and it was seriously life limiting. I’m sure I was going through the motions of TSW plus infection plus sunburn. Red raw, ozzey, tight, ripped, broken, inflamed, itchy, sore sore skin 🙁
In the top left pic from Feb 2016, I was in a place where I was contemplating life (not in a good way) and very badly mentally affected. I didn’t take a single day off work and I was completely burned out. My dermatologist saw me and took a skin biopsy (hole punch in skin and sent to lab for testing). He put me on oral steroids and anti biotics and then weaned off and thankfully, for me, it never came back any where near as bad.
I didn’t want steroids but I wasn’t able to go on another day in the condition I was in – I was desperate. I took all the allergy/blood tests you could possibly take and figured out what triggered me (dust mite allergy) and clearly the stress had an impact. I started seeing a therapist and figuring out holistic wellness opportunities. I found emollient creams that suited my skin. It did come back in certain areas but much more sparingly and I was able to manage with emollient creams and topical steroids for the next ~8 months until eventually It just went away.
Then for next 2 years I only managed with emollient creams – I did an anti inflammatory diet which was so amazing for me but I still had pigmentation etc and sensitive skin, and in 2019 I left a toxic relationship and the pigmentation went (coinciding with ~2 years of no steroids) and my skin just changed entirely and became less sensitive.
Now if I get dry skin again or eczema starts to creep in, I manage with yoga and emollient care and looking after myself. I didn’t take immunos, but I would have done had my skin not responded to the oral steroids. I haven’t used steroids in over 3 years now after using on and off for many years, but for me, going on oral steroids and using topical steroids after that helped control my skin and it never came back anywhere near as bad like you sometimes read it does. I found anti histamines an absolute life saver for the itch.
I don’t use steroids now as I can control it but this is my personal experience and a choice I made as I was unable to cope without intervention and I commend anybody who can because they’re amazing in my opinion!
Scaremongering Online
When I was suffering I found there was lots of scaremongering online that scared me to death and I knew the fear and mental health implications would be just as damaging as the condition so much so I tried not to read it. I’m now seeing other people go through their skin struggles publicly and utilising the amazing communities online. I’m an advocate for TSW and knowing how potent steroids can be and not relying on them long term – but I can’t credibly say I did TSW and I think steroids are the devil when steroids were what, for me, helped get my skin under control (even though they probably also contributed to it going out of control). I believe holistic wellness (mind/body/soul/natural/medicine) ie a combo in whatever ratio works for you is the best and no ones journey is the same ❤️
I of course understand why people feel so strongly about steroids, especially because they feel let down by the medical community. I realise that when I’m showing incredibly raw photos I should remind people to consider their options re steroids and the potential implications of overuse and spread awareness – which I’ll totally do because it’s important.
I’ve had people tell me I shouldn’t talk about my skin as ‘eczema’, and instead they’ve diagnosed me with TSW. In that same sentence they speak about the importance of being careful about posting about medical/health topics. Bit of a juxtaposition that I don’t understand. I talk about skin conditions as a broader spectrum and healing as a journey based on lots of factors rather than me actively encouraging people on their medical/health issues specifically – which I personally choose not to do because I am not medically qualified.
I’ve had eczema since 2009. I had a skin biopsy (hole punch in skin and tested in lab) to confirm eczema and bad infection and I was incredibly sunburnt from using uva/uvb beds for 2 months. I have a severe dust mite allergy which triggers skin flares (especially when turning heating on in winter). I don’t think it is dangerous for me to talk about my skin as eczema. To anyone who diagnosed me with TSW (I’m not disagreeing) – there’s a huge irony in you doing that after highlighting your concerns about me sharing a medical diagnosis I had.
I’m genuinely curious as to why I took oral steroids and my skin was so much better afterward, the antibiotics clearing up infection and after continuing to use topical steroids in places where it did come back slightly, it eventually got better and better as I focused on personal trauma, mental health and good routine until I didn’t need to use steroids anymore. I thought TSW skin got worse after stopping steroids? Wouldn’t my TSW have rejected the antibiotics/made my skin much worse when I came off? I appreciate people have difference experiences – for me, choosing to use steroids was what worked. I may be a tiny minority and extremely lucky. But not all people respond the same and it’s important to recognise that.
Oral steroids make some people’s skin much worse eventually, it made mine much better – so I don’t say steroids ruined my life because by pure fact, in my circumstance, they didn’t in the end – but oral and topical steroids, maybe by fluke or luck actually got me out of that skin situation in the pics you see – which is why I try to avoid specifics. I don’t promote steroids, I choose to focus on spiritual/ holistic healing and I don’t want anyone to feel pressured into doing anything online or judged for the medical decisions they make.
I haven’t had itchy skin for a few years, but because of my dust mite allergy a few times last Winter when I turned the heating on as it got colder so dust mites activated, I got itchier so upped my emollient use and it helped so much – I have eczema based on a contact allergy / stress / and a past compromised skin barrier. People have skin conditions that vary in nature / cause and responsiveness to treatment.
Holistic Wellness
My account is now largely about relationships/mental health/chronic illnesses/ personal struggles rather than specifically a skin blog. But I know a lot of people follow me for skin bits! I talk about health and healing in many dimensions. I understand eczema / topical steroid specific accounts would like to see more people speaking about the condition in their posts, but just a reminder that if you read other people’s posts based on what you want to see, you might be disappointed. We all share things based on our own experiences, that’s why diversity of thought and inclusivity of experiences is helpful in so many aspects of life.
There is plenty of helpful TSW content online that I’m very happy to share widely and will do so. But the narrative: “if you use steroids it WILL come back worse” or “do NOT use steroids” is negligent and not appropriate. It is also NOT what happened to me. I made the right decision for me, I focused on my gut health, my mental health, my work life, my personal life, and realised I had a lot of holistic healing to do. And I did it.
I am in awe of the amazing people online sharing their stories and warning others about the over use of potent steroids. There is so much support and social media is a wonderful place to find a community and learn from one another. But it is NOT a place to give someone a diagnosis, to discourage seeking medical help (especially when in a compromised and vulnerable place mentally), nor is it a place to TELL somebody else what to do in an unkind or harassing type way.
Imagine putting pressure on people who are suicidal to refuse medical treatment, demand that they don’t moisturise, demand what they should tell others. It is dangerous and unnecessary.
My Message To You
Please never EVER feel that you owe instagram an explanation or that you should or shouldn’t do something for fear of what people online might say. No judgement to anyone, no pressure, no shame. You have to make decisions wholeheartedly on your own terms.
Not everyone goes down the same road. We all have different journeys. Don’t judge someone by their journey because it’s not the same as yours. Instead, look at people’s attitude towards their journey.
It is negligent to harass or bully somebody into making a medical decision. No one should be speculating on a person’s journey or creating division over the basic fact that people respond differently to the same illness / treatment.
Scratch That UK are an amazing resource for anybody with questions or concerns regarding steroids. As always, speak to your GP or dermatologist. All the love and I am always here to chat any time.