Ever been gaslit by your doctor, GP or specialist dermatologist? This probably happens for people with any conceivable medical complaint or long-term condition. I don’t think it’s just reserved for eczema and topical steroids. For the purpose of this gaslighting course we are just concerned with topical steroid withdrawal and how it is currently viewed by the specialists we see. So here, to help you navigate the utterly despicable behaviour of our medical professionals is my Gaslighting #101
20 responses to medical gaslighting about your skin, eczema and or topical steroid withdrawal
1). Dermatologist: Rolls eyes and ignores what you’ve just said
Response: Excuse me, but I just raised a very important issue for me, it’s why I came to see you today and I’d really appreciate it if you could listen to me and discuss this with me. Thank you.
2). Laughs at you when you mention TSW
Response: I’m confused that you think my skin is funny. Would the head of this surgery/clinic/hospital think laughing at a patient who is asking for help is appropriate? All I’m asking is that you listen to me and my concerns. It feels very dismissive.
3). Dermatologist: There is no such thing as TSW, it’s just uncontrolled chronic adult eczema
Response: I know my skin with eczema and I know that this is a worsening rebound that happens when I try to stop using topical steroids. My skin is 100% addicted to these creams. I have done my own research into this condition. I have some handouts for you here, and also some references to clinical studies, as well as links to the British Association of Dermatologists, MHRA and National Eczema Society detailing what Topical Steroid Withdrawal is, recognising its existence and detailing the symptoms.
4). Dermatologist:: I haven’t got time to read those
Response: This is really important to me. I know you are busy, but living with eczema I have noticed my skin change. TSW is real, it’s recognised by medical bodies. Sureyly you have a ‘duty of care’ to all your patients. That doctors should always uphold their ‘Bedside Manner’ and also pledge to ‘Do no harm’. If I took this attitude in my own career, to dismiss any research, progress and updates in my own specialist field, I would lose clients. I hope you take some pride in your professional career, and in being the best you can and keeping up with advancements. I appreciate that you are busy, but you could be doing great harm to your patients if you don’t make time to understand this very debilitating and appalling withdrawal process. I will leave them with you and also email you all the links and electronic copies so that you can print them off and share with your colleagues. There are also videos and documentaries that I hope you will find useful and helpful. Topical Steroid Withdrawal is very real, as acknowledged by BAD, MHRA, NES etc.
5). Dermatologist: I’ve never seen anyone else with topical steroid withdrawal
Response: How do you know that if you refuse to find out more? Understand the symptoms, how it differs from eczema symptoms, what causes it, how it happens and how to spot the signs? I think what happens, is that dermatologists dismiss our concerns, can’t help us, so people going through TSW do so alone, at home, without any support. But you will never see them again because they won’t return, because you refuse to even have a dialogue about this and it’s so hurtful and too painful to continue to get taken seriously. We all give up trying to get heard and go away and get through TSW alone. I wonder how many adult patients who present with worsening eczema who then stop coming because you dismiss their concerns?
6). Dermatologist: Don’t get so upset, I’m trying to help (when they continue to push more topical steroids and clearly aren’t listening)
I am upset, I leave every appointment in tears, because I just don’t feel like you are listening, showing any empathy for how I feel nor trying to help me find solutions and therapies that fit with how I want to heal. I have decided to got through topical steroid withdrawal for myself. A condition caused by medication that YOU prescribed but refuse to acknowledge. Just for a moment consider, what if I am right? and you just ignored me and dismissed me. Can we please discuss what you can do to support me through this? Natural and supportive natural treatments?
7). Dermatologist: In my opinion you just need to use more topical steroids, blitz your skin with a stronger potency, use it every day, morning and night for two weeks. You get like this because you don’t use it as prescribed and don’t use enough of it.
Response: I’ve been using topical steroids, as prescribed now for xx years and I know my own skin. It is not helping. When I finish a course and stop, the eczema comes back worse than before. It’s getting worse and I’m doing what you tell me to do. I think I need to find a different treatment. I use the topical steroids as directed and my skin no longer heals, it’s just getting worse and when I stop, deteriorates so rapidly into full body crisis and that’s different to my original localised eczema symptoms. My skin is addicted to topical steroids and I am considering topical steroid withdrawal. Can we discuss this?
8). Dermatologist: You’re just being steroid phobic
Response: A phobia is a fear of something that is not a danger to me, for instance, being scared of spiders or having a phobia about being in a dark room. Being ‘phobic’ of using steroids is completely the wrong term here. You told me topical steroids would cause thinning of my skin, you can’t blame me for being worried about this. How thin will it get? When does it stop thinning? I’m the expert in my own skin and how it feels, I have been using topical steroids since childhood, as advised by specialists like yourself. They have not controlled and stabilised my skin. Far from it. They appear to work at first but I can tell you from my own experience, if I stop using them my skin is worse than it’s ever been before. I have read about topical steroid withdrawal and seen photos of what my skin could get like, this is terrifying. So yes I’m scared, but to call it a phobia is very dismissive. I think topical steroids have damaged my skin, made it addicted and leaves me in a spiral or rebounding eczema. How would you feel if this was happening to you?
9). Dermatologist: Topical steroid withdrawal is very rare, it can only happen from oral steroids that go internally or excessive use of high potency steroids on the face or genitals.
Response: This directly contradicts the recent advice shared on the MHRA website and from the British Association of Dermatologists and the National Eczema Society. There are also two charities helping who are going through TSW, ITSAN and Scratch That. I will send you the details of both so you can update your understanding of TSW. It can happen with topical steroid creams and it generally has little to do with genitals or just the face. Most of us know not to use it on our faces and don’t do so. However you HAVE advised me to use Elocon on my face at times and told me it was safe. You can’t now claim that doing so is my fault.
10). Dermatologist: I’m so sorry you’ve been exposed to this TSW social media trend. It’s so damaging and very frustrating for us specialists in skin, eczema and atopic dermatitis to see all our hard work being undermined by people with no experience.
Response: Oh don’t be sorry. It’s the first time I’ve felt like anyone was actually listening to me, understanding me and experiencing what I’m going through. To finally realise I am not going mad, that I am not suffering alone. There are so many people going through this. It’s real! It’s brutal. This is NOT a social media trend. To call it a trend is the most unfair gaslighting I’ve ever heard. People are going through hell, TSW is torture. This is not a trend, it is a disaster, a travesty, an avoidable chronic suffering. For you to dismiss it is confusing, as an expert, wouldn’t you rather try to understand why? research it and find out what people are getting so fired up on social media about? What if we’re right? What if there is truth in this, and TSW is real and you ignore everyone who asks you for help and continues to ignore people? If I were in your position I’d be concerned, worried and keen to find out why. I sounds like you’re just dismissing it and burying your head in the sand.
11). Dermatologist: You’re gaslighting my years of experience by keeping on challenging all the advice I’m giving you.
Response: If you want a definition of gaslighting, I’ll explain it to you. It originates from an old film called Gaslight, where the husband tries to trick, confuse and control his wife, by belittling her concerns, tricking her and controlling her, using a gaslight that he can turn up to indicate he has got home to his office. Gaslighting is when someone refuses to listens to another’s very real concerns, instead forcing their own version of the truth. Your behaviour is gaslighting, you talk over me, roll your eyes, ignore the things I say and dismiss all my concerns. As a patient I have a right to put my concerns to you and to be listened to an taken seriously.
12). Dermatologist: You can forget about TSW because you don’t have it. I know badly controlled severe eczema when I see it.
Response: Well, I would like to challenge your view on my skin. I have visited the ITSAN website and I have all the symptoms of TSW (list your symptoms) – None of these are things that happened when I had my original eczema diagnosis. Here is a handout explaining Topical Steroid Withdrawal and how it differs to eczema. I would really appreciate it if we could discuss this when you’ve had a chance to examine this condition. It sounds like you don’t have all the correct information and experience of this condition.
13). Dermatologist: You are refusing all the treatments I have to offer you so I will have to discharge you.
Response: I respect this and I do understand, I am going against medical advice, however I am trying to heal my skin naturally and would really appreciate it if you could see me, even if it’s just once a year, to chart my progress. I really believe that I can heal and manage my skin naturally. And if you just dismiss patients doing this you will never see if they are right. Are there things we can do that might support my natural skin healing journey? Things like allergy testing, immunotherapy, patch testing, steroid free supporting treatments? I don’t believe there is only one way to heal and I have the right to choose my treatment.
14). Dermatologist: You’ll never heal on your own, you’ll be back for topical steroids, immuno-suppressants or the new treatments we have coming soon. It’s not possible to control eczema without these drugs
Response: How is telling me I will never get better helpful? Would you say this to someone with cancer who wanted to try alternative therapies? Doesn’t the patient have the right to choose and agree to their own treatment? My choices may seem controversial to you, but they are my choices. Doesn’t it make sense to support these choices? and help me? Find ways you can help rather than telling me I will never get better? I also know people have healed through Topical Steroid Withdrawal and return to manageable skin with just normal eczema. I believe I can achieve this too and hoped you would support me in that decision.
15). Dermatologist: Just keep using more of the topical steroids, why would you not? why do you want to go through withdrawal when you don’t have to? It’s needless agony and suffering for you.
Response: I just don’t agree that continuing to use a drug that has stopped working and not only stopped working but done irrevocable damage to my skin barrier is the answer. I have lost faith in your advice, and in this cream. I don’t want to keep using a cream that barely maintains poor skin function. Can we discuss ways in which you might support or recommend alternative treatments that are not immunosuppressants?
16). Dermatologist: Why are you so worried about topical steroids? They’re safe
Response: I feel like they are masking a natural reaction. Eczema is a sign something else is off kilter, or not quite right. I don’t believe that long term, just putting something on the skin to stop and ignore that natural reaction is helpful. I think we need to be looking at finding out why and trying natural solutions to reducing inflammation and finding out the triggers.
17). Dermatologist: TSW is just nonsense. Forget about it and just accept that you will need to use medication for the rest of your life
Response: That’s your opinion but I disagree. I have done a lot of research and have a list here from the MHRA, the British Association of Dermatologists and the National Eczema Society explaining what TSW is. You’ve heard of them I hope? I’m happy to pass on all my research, with videos you can watch, documentaries, studies and charities and blogs.
18). Dermatologist: I am quite happy with my own knowledge and years of training to become and dermatologist. I am the professional here
Response: OK tell me when was the last time you updated that training? Went on any training or refresher into eczema and treatment? When did you do your training was it solely focussed on what pharmaceutical interventions and drugs you can use? )
19). Dermatologist: You need to stop googling what’s wrong with you
Response: I am googling my skin condition because I never get any answers from you. I am experiencing terrifying deterioration of my skin and your answer is to just use more cream, and for longer. Or you suggest other drugs that I don’t understand and that also seek to turn off or stop the inflammation. This sounds great but is there an underlying problem that we are missing here? And I am googling sources and resources from reputable places that you should also be aware of. (Repeat that you can send or hand over all your research to them).
20). Dermatologist: Topical steroids are just topical, they cannot be absorbed into the body.
Response: I would disagree. There is a lot of research that you can read, I’ve got the links and information here for you. (always go armed with supporting evidence) TSWAtlas videos explain how topical steroids are absorbed into the skin. (Link to YouTube Video – What is TSW?)
It is absorbed into the body and damages the skin and nerve endings as well as other organs that are involved with cleansing the body such as lymphs, adrenal, liver, gut, and more. This is all connected. Can I ask you to look into this before we next meet please so we can discuss properly?
21). Dermatologist: Gets up, walks out and just goes to get his next patient
This actually happened to me. My dermatologist just decided he didn’t want to continue with our consultation, got up and walked out. Possibly the rudest behaviour I’ve experience. I wrote to him by email expressing my disappointment and sending him all the links and documents again. He won’t read them but what else can I do? He did apologise and sent this response: “Thank you for this. I’ll take a look. Apologies if I came across that way; not intended, I just have a concern we / you should be managing things more actively and I don’t want you to miss out an opportunity to get better control of your skin and allergies, which to be fair will always be there. I know modern medicine isn’t perfect. In the end it is your choice and I definitely respect that and I enjoy our meetings. I hope to catch-up in a year but of course sooner if there are problems before then.“
22). Dermatologist: Interrupts, talks over you and won’t listen.
Response: Just sit, calmly, and look at them. Straight in the eye. When they stop talking, which they will because they’ll feel uncomfortable. You can return to your point. e.g. OK so I’m not sure if you caught what I was just saying, that I am worried about my skin and the fact that my skin is addicted to topical steroids and that I am now going through topical steroid withdrawal. (Or whatever the point was you were trying to get across.) refer to questions above with organisations to reference and offer supporting evidence.
Oh how I will relish going back one day with clear skin. Or maybe not clear skin but well managed skin – I think it is possible to control and live with eczema and not use immuno suppressing medication. I dream of this day. Maybe it won’t be perfect but it’s so much better now. It will be four years in January 2023 and my skin is looking pretty spectacular now if I do say so myself. The only real problem areas at the moment are behind the backs of my knees and elbow creases but I’m working on that.
To be able to say now that I do not use ANY medication for my skin or asthma is something I will never get over. I do still have a blue inhaler for emergency asthma attacks and carry this with me. However not only do I no longer use topical steroids, I no longer need oral steroid preventative inhalers. For this I will forever be grateful.
Why dermatologists struggle to accept TSW
We need to all realise that to our GPs and dermatologist, this isn’t widely understood. They have been assured through their training that this medication is safe by people they trust so it will take time to communicate what is really happening.
- Rare – If their limited knowledge comes from statements that it is rare, they can be forgiven for not thinking our skin problems are TSW. They probably do just believe they’re seeing worsening uncontrolled eczema. We need to just quietly and calmly keep on raising awareness and encouraging them to find out about TSW.
- Use it correctly – again it’s hard for any of us to even remember our usage and we certainly can’t prove how we used a medication after the fact. What we need to communicate calmly and firmly is that we followed their advice, and that their advice differs from what is now suggested ie. 2 weeks use then take a break from treatment. This is new advice and certainly not what I was told, I was told to just use it when I needed to and stop when it got better, so what happens when it just never gets better?
- Repeat prescription – It would seem that no one is actually monitoring or being alerted that we are being given a dangerous medication over and over again.
- Pharma training – Their training will have told them that topical steroids are the first line of treatment and it works well. It does appear to work well at first. And not everyone experiences problems and gets TSW. So we have a problem when the cheapest and easiest treatment, that is offered to everyone with eczema, is not working. What do they replace that with? Their job is to get rid of the troublesome symptoms and rarely to look for root causes. There is no money in finding out what causes inflammation.
- TSW is not listed on medication side effect warnings – To date there are no official medication warnings for withdrawal, only skin thinning. This hopefully will be changing soon but until it’s there in black and white as a known problem it will be hard for many specialists to accept it.
- Research is lacking – We need more research. Currently the research done is woeful. The most recent medical study was purely looking at the ‘growing social media trend’ which is infuriating because it just plays into their view that we are all steroid phobic hysterical crazy people. Check out Topical Steroid Withdrawal Studies to read more on this.
New treatments coming along to replace topical steroids are just more immuno-suppression or aimed at halting or stopping a body reaction. They are also very expensive. We don’t yet have a solution to what else they can do to help patients with severe eczema, the whole system needs an overhaul. It starts with kids who should be tested for allergies, food and contact and taught how to manage the condition and treat naturally, instead of babies being given strong potency steroids.
How we’d like dermatologists to speak to us
I think we can all agree, all we really want is:
- For them to listen.
- Respect our years of living in our own skin.
- Do some research, to find out what we’re going through and at least meet us half way, having found out what TSW is.
- Stop being so dismissive
- Stop calling us steroid phobic, neurotic, and telling us TSW is poppycock, nonsense, not real etc.
- Perhaps one day, for them to admit that they didn’t know these drugs were doing us harm, but to accept what we are going through is real.
- To diagnose us with TSW and help us with real, natural healing solutions.
- To recommend steroid free alternatives to those who wish to find drugs that are not topical steroids.
- To learn from us and realise that sometimes the patient might actually know more than they do.
- Be kind and empathetic. It’s OK to not understand, never have heard of TSW (Actually if you are a medical professional and don’t know what TSW is you are in the wrong job) but you can still be gentle and try to be sympathetic with patients who are clearly really struggling and asking for help.
I’ll add to this as I think of things. Derms, if you’re reading this, we don’t want an argument, we just want a dialogue where you aren’t just dismissing all our concerns. And do the work! Be the best you can in your profession. That includes at least familiarising yourself with even rare side effects of the medication you prescribe daily as a first line treatment for every eczema patient who walks in your door.
And please consider, what if this not rare and everyone using topical steroids long term is experiencing withdrawal rebounding worsening eczema BECAUSE we are all addicted and stuck in a spiral that is not our fault.
Please share your experiences
I’d love to hear of any of your particularly gaslighty comments you’ve heard, or even the good experiences. Let’s spread the good advice and let the dermatologists hear how we’d like to be treated. I don’t want this to become a bashing derms blog, I just want to help both sides to more forwards positively towards a better outcome.
Because currently I feel that the majority of dermatologists are failing their patients on a daily, hourly basis.
You may also be interested in reading:
- Topical Steroid Withdrawal – Frequently Asked Questions
- A dermatologists review of The Shape of Skin, eczema poetry book
- TSW is NOT a Social Media Trend – TSW Rant!
- How to get the most out of your Dermatology appointment
Photo by Tima Miroshnichenko on Pexels