Today I went to visit my dermatologist for a skin check-up and he gaslit me from the minute I walked in to the moment I left. He refuses to accept that topical steroid withdrawal even exists, despite it being recognise by the MHRA and basically ignored everything I said, dismissed all my concerns and views, interrupted me and talked over me…
What is gaslighting?
From wikipedia: loosely defined as making someone question their own reality. The term may also be used to describe a person (a “gaslighter”) who presents a false narrative to another group or person which leads them to doubt their perceptions and become misled (generally for the gaslighters’ own benefit), disoriented or distressed. People who are gaslit are continually fed false information, in this case, you just have eczema, you will never get better, steroids are completly safe, you used them wrong, these new treatments are completely safe… you do not have topical steroid withdrawal.
It originates from an old 1938 play, Gas Light, and its film adaptation where the husband flickers the gaslights when he’s pretending he is out of the house, whilst he’s really hiding in the attic. He tries to convince his wife she is imagining things.
“Doctors, GPs, dermatologists, if you’re reading this… please don’t gaslight us. Listen to us.”
Ruth – whatallergy
I’m not even sure why I went now because it was a complete waste of time.
I wanted him to to see TSW skin, what it looks like.
I wanted him to follow my journey and see what I was experiencing.
I wanted him to listen and have some compassion but all he saw was poorly controlled and managed eczema.
My dermatologist said to me…
Things my dermatologist said to me this morning:
- You just have very poorly controlled eczema
- I don’t think you have Topical Steroid Withdrawal
- I don’t believe Topical Steroid Withdrawal even exists.
- If used correctly, twice a week as a maintenance dose, topical steroids are completely safe.
- You won’t succeed at this refusing treatment
- I’ll see you in a year and if you still don’t want treatment I will discharge you
- You’ll give up and have to use Protopic and a biologic
- How about Methotrexate? Had to remind him that gave me shingles and I had to stop using it
- How about Dupixent?
- How about Azathiaprine?
- I’m old school and I’ll never believe in this TSW
Also accompanied by the eye roll, the smug knowing smile that he is right and I’m a completely hysterical idiotic woman.
I’m really not sure why I went now. He didn’t listen as I listed my symptoms and why these differ from severe eczema. He refused to entertain that TSW even exists.
He refused to put TSW on my records. All he agreed to put was, “she is not interested in any treatments offered and I have agreed to see her in a year.”
At this point, in a years time, if I still continue with TSW and am not healed, I would be discharged.
I just wanted him to see my TSW symptoms – all he saw was ECZEMA – THIS IS NOT ECZEMA 🤬
You should have seen his face when I told him I wasn’t using paraffin emollients anymore and that I was trying moisturiser withdrawal…
A response that just proves his ignorance in this subject, because healing from TSW can be shortened and aided by No Moisture Treatment and Moisturiser Withdrawal.
Topical steroid withdrawal is real
And here’s the proof
- MHRA has recognised TSW as real due to so many Yellow Card submissions about the damage topical steroids have caused.
- There is a charity for it called ITSAN in the US and Scratch That in the UK.
- The British Association of Dermatology AND the National Eczema Society have both issued joint statements explaining TSW for professionals.
- There have been numerous studies into TSW. To find out more the links to these can be found in the TSW FAQ and the Sample Letter for your dermatologists – link at the bottom of the page.
How do we get them to listen?
I am feeling surprisingly calm but I need my body to heal. I need to go back in there healed and give him the Eff you, you gaslighting old school arsehole.
I’m very proud that I remained calm and polite but very unimpressed with how he spoke to me.
He’s not watched any of the documentaries I’ve sent to him and refuses to read any studies or acknowledge that I have any credible argument against his years practicing as an immune suppressing practitioner – sorry dermatologist!
I just want a dermatologist to look me in the eye and say, sorry. We failed you. You are experiencing Topical Steroid Withdrawal. How can we help you heal? I can’t even get the natural balms I want to use on prescription. I think it will be VERY LONG time before anything changes.
Dermatology in the UK needs a HUGE overhaul
For now it’s just us against the broken system.
Basically it’s a whole shit heap.
Dermatology in the UK is rotten to the core.
I feel so sad, let down and despondent. It took a lot of courage to walk in there today and he was such an annoying gaslighting ****..
But don’t lose hope. That’s just me ranting in disbelief and anger.
But every time a patient mentions TSA, TSW or Red Skin syndrome to their GP or dermatologist, that’s a step forward.
Every time one of us heals our own way, that’s a victory.
As I was leaving I said something like… “I know you hate me because I disregard everything you tell me to do.!” To which he replied.
“No, I don’t tell patients what to do, I offer them options.”
Seems like I’ve run out of options…
What happens when ALL the options are immune supressing solutions with side effects that could do even more damage to my poor, poor struggling body?
Instead I am left paying for my own expensive natural emollients because all the NHS will fund me is paraffin based stuff, paying for my own bandages, tubular bandages, all the natural treatments I’ve found for myself. I am taking nothing from the NHS how.
I will just add he send me for blood tests for my air borne allergens but I think I know what I’m allergic to anyway: dust, cats, pollen, mould, birch… let’s see what else comes up.
A plea for help from healed TSW warriors
So what I’d like to ask for is that all healed TSW warriors go back to their GP and doctor, dermatologist or specialist to tell them how they healed. If they don’t ever see anyone come through this they will continue to believe that they are right.
Please do this for me. Please. Because going through that dermatology visit whilst going through TSW has left me feeling hopeless, doubting and wondering whether he is in fact correct and I will never heal. I’m terrified that he’s right. TERRIFIED that I have just spent three years torturing myself with nothing to show for it.
THREE YEARS and for what? This is so hard.
When you are ignored, disbelieved, gaslit and dismissed. Yet you fear this is a medical emergency for the future that our current dermatology system is ill prepared for and hiding their heads in the sand.
I will NEVER go back to dermatology in the UK. I am now looking for a holistic therapist who can help me find a natural way to continue to heal. I’m not giving them the time of day any more. I know I am right, deep down I know I am. I have to stay strong and keep believing.
I am off to do some yoga stretching and a short meditation to centre myself again.
I am so very sorry to read this.
Sadly, its a common problem of medics just not listening to us, the patients.
They are an “authority” and should be just about worshipped. They are experts. Know it all and have dealt with this type of problem for a long time
Even though they may have only seen us for about 30 minutes.
We have lived with whatever condition for a good few years.
Perhaps we are expecting far too much.?
Listening skills are in short supply, same as common sense isnt common.
Thanks Janet for your comment. Yes I think they think they know it all from what little they studied way back in med school. Yet have they kept up with the new research and popular fears of patients? No they have not. Is this fuelled by big pharma and they money the derms get when we go on to use these new drugs like biologics and JAK inhibitors which he discussed with me today. He did actually express concern about the JAK inhibitors but dismissed my concerns about using a new drug without enough testing and the views I’ve heard from is that Dupixent works at first for some and then stops. So ultimately a short term solution. Another sticky plaster solution with no one looking to find the real problem. I really am worried that the dermatology system is just completely broken. The medication is damaging us not healing and in the end making is so reliant that many will never be able to go through this horrific withdrawal and are not hooked on something that is destroying their immune system. I don’t know what the answer is but I will continue to bang my drums over hear.
This is terrible. I think many doctors, such as yours, are stuck in their heads. still in a place when they left med school and everything was solvable and all you had to do was follow the algorithm and you’d be a famous healer and have your name in lights. Then pesky real people come along and ruin it for you. The doctors just can’t compute this new reality and so its easier that you’re the problem rather than realise that what they’ve been taught doesn’t work and they’re not God. What a blow to the ego. Can’t be them, must be you!
Yup! And it’s so frustrating. They bury their heads in the sand and refuse to consider any opinion or outcome other than their own outdated one. The current eczema treatment pathway relies on a ‘sticking plaster’ approach, wanting a fast solution by suppressing the immune system instead of investigating why the body is struggling and looking for the root cause. I really believe that adult eczema is merely addiction to topical steroids, a terrible trick of offering healing yet instead putting the person in a prison of spiralling addiction and no solution… apart from a horrific withdrawal journey. And the NHS and current dermatology set up cannot cope with this truth. I think it will take some time to effect change but every little conversation with dinosaur derm helps. The more we can get them thinking about this the better. Thanks so much for your comment and for understanding. TSW and eczema can be a lonely condition, you feel like you are the only one and no one understands the sheer weight of itch, pain and mental exhaustion it takes to live with it.
That kind of visit is SO depressing on every front Ruth. Althogh you KNOW you are right, it still instills that tiny scintilla of doubt which it takes days to crush. Medics like that are so Teflon coated in their arrogance that nothing you say or do even scratches the surface. Like paediatricians who see a child for 15 minutes and refuse to listen to parents who live with the child 24/7.
So sad to think of how many of his patients who don’t have your knowldge or your guts are being bound to a steroid treadmill with no way to get off.
All you can do is to continue to bang your drum. Thank goodness that at least you are not alone and gradually consultants like yours will get pensioned off.
I love the teflon analogy – so tough nothing can get through. I think actually it all begins with the lack of understanding in paediatrics, where eczema in young babies and children is treated first line with topical steroids rather than finding what is causing the problem. By so doing you create a patient for life. Big pharma created the most deadly poison with topical steroids and I worry the new immuno suppressants, biologics and JAC inhibitors are going to be just as bad, perhaps even more so. We need to be heard, we need to acknowledged, we need an apology, we need support as he heal and most of all we need a fundamental change in the treatment pathway. And will never stop banging my bongo drums for this change. And if I return to visit my dermatologist it will not be advice or treatment it will be to show him I have healed. I sent him a very polite and carefully worded email after that consultation and I did, to be fair to him, get an apology of sorts. I know he is busy, the allergy and dermatology clinic is over stretched and my appointment was cut short as he literally rushed out of the room to escape my questions, leaving me to collect my belongings and follow him…. to where at least he did order blood tests to check my air borne allergies. The treatment I get from my local practise for asthma is so far superior and I just wish they were linked, connected and communicating with one another. It’s just such a mess at the moment. To hear that what happened to baby Ruth so many years ago is still happening just the same with no change or advancements is heartbreaking.
I had exactly this with a neurologist recently who denied the histamine cause of migraine and that they could be triggered by foods. Had never heard of MCAS and said “let me do the diagnosing”. How I didn’t punch him, I will never know! He said you have migraine. Dur, I know that! Sorry you had to suffer it too.
It seems to be rife, this lack of care, absence of any empathy and inability to listen to patients on any level. We are the experts in our own body and our own condition and many of us, as I know you do, do our own copious research, stay ahead of news and research and have explored and understood our condition in far more detail than the so called professional we are forced to go through to get help. It’s bonkers. All we can do is try to do the best we can for our own and our children’s health and continue to question these professionals. Personally I think they should be disciplined for lack of care. What happened to ‘first do no name’ and the ‘bedside manner’ because so many of us leave these appointments feeling lost, unheard, gaslit and belittled. They ought to be ashamed of themselves and I fail to see how they can enjoy treating patients like this. Thanks so much for your comment and I hope you can find some relief from the migraines.
If you’re reading this I thought I’d share here the letter I sent to my GP. You can download a word copy of this letter above, but those who don’t want to download but just read it. Here it is:
Dear (insert name of gaslighting dermatologist here),
I would just like to put down here what I failed to get across today because Topical Steroid Withdrawal IS recognised in the UK.
Topical Steroid Withdrawal (TSW), also known as Topical Steroid Addiction (TSA) and Red Skin Syndrome(RSS)N, is a debilitating condition that can arise from the use of topical steroid creams to treat a skin problem such as eczema. For further reading, please research The International Topical Steroid Addiction Network which is a nonprofit charity formed to raise awareness about a condition called Red Skin Syndrome, also known as Topical Steroid Addiction or Topical Steroid Withdrawal Syndrome. https://www.itsan.org/ Also check https://scratchthat.org.uk/ resources provided by a group of TSW survivors in the UK
Please watch these two documentaries showing TSW:
Preventable – saving our largest organ – https://youtu.be/RMbtf3C8BZk
Skin on Fire – Created by dermatologists https://youtu.be/GuaBbsL1qKA
Medical Studies into TSW
There have been a number of studies;
• The red skin syndromes: corticosteroid addiction and withdrawal’, Expert Review of Dermatology, 2006
• Steroid Addiction’, International Journal of Dermatology, 1979. https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-4362.1979.tb01905.xUniversity Steroid Addiction – Pennsylvania School of Medicine (US), and the University of Munster School of Medicine, in West Germany, was published in 1979. ALBERT M. KLIGMAN M.D., Ph.D.,PETER J. FROSCH M.D.
• Side effects of topical steroids’ – a long overdue visit, Indian Dermatology Online Journal, 2014
• Topical Steroid Withdrawal in Atopic dermatitis – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4207549/
Recognised by Government bodies and charities
See the Gov.uk website here: https://www.gov.uk/drug-safety-update/topical-corticosteroids-information-on-the-risk-of-topical-steroid-withdrawal-reactions
National Eczema Society and British Association of Dermatologists issued joint guidance on TSW – https://eczema.org/wp-content/uploads/Topical-Steroid-Withdrawal-position-statement.pdf
I know you say you are ‘old school’ and don’t believe this is a thing, but please can I ask you to at least consider that it exists, even if the proof listed above is not yet enough to convince you. I’ve attached a few pictures of my skin during one of the crusting and excessing flaking cycles of TSW symptoms. This is nothing like eczema.
If you want to offer a duty of care to your patients and really truly ‘do no harm’ you owe it to them to at least understand this condition.
Today you dismissed pretty much everything I said and I think you’ll find that’s called gaslighting.
PS. Hope you enjoy the new cover and title of my Anaphylaxis – The Essential Guide. Please show Liane too.
Many thanks
Ruth
And lo and behold, the man has responded. I’d like to say that although I left yesterday ranting and furious, my dermatologist is someone I have grown to respect. He welcomed me to his clinic when my local service was unable to see me, has helped me a lot with the allergy side of things and isn’t a bad person. I have had more positive consultations, but usually when I’m going along with what he recommends, like giving in to methotrexate, agreeing to patch tests and trying UVB.
So here is his reply, because it goes some way to proving that if you have the strength and can face difficult conversations you can make small progress:
“Hi Ruth,
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.
Regards, your gaslighting dermatologist.
Note: your skin and allergy problems will always be there…
But we do have a laugh, i’ve got to know him over many years and he has a very dry sense of humour. I’m not sure what he made of my presentation of my poetry book. The Shape of Skin, with postits marking the poems, “I hate my dermatogist’ and ‘Stop gaslighting me’ LOL 😉
Unfortunately, anyone with allergies and intolerances is treated the same way. I remember when I first went wheat and dairy free around 20 years ago it was as a result of a documentary that I had seen on the TV. When I mentioned this to the young, junior doctor that I was seeing, she said ‘oh, you see all sorts of things on TV’ as though it had been in East Enders! She refused to believe that most of my symptoms stopped as soon as I withdrew those items from my diet.
The whole Covid ‘pandemic’ has caused me to lose all faith in the NHS. However, in fairness to the medical ‘professionals’, thanks to John Rockafeller at the start of the last century, big pharmaceutical companies fund and lead their training. They are not taught to view a patient as a complete person but as a bunch of treatable symptoms. As a result, many people soldier on for years with a bunch of symptoms that, if looked at holistically and treated at source, may be reversible.
We are medicated from the moment that we are born – a very clever marketing ploy, creating patients for life. TSW totally exists and many other so-called treatments create more problems than they solve. In the US and UK, bungled medical treatments were the third cause of death (cancer treatment is responsible for at least 25% of ‘cancer’ deaths). Since 2020, they have moved to the number one slot and it is only going to get worse. Well done for fronting your dermatologist and calling him out. His concilliatory reply may make him think twice before gaslighting someone else. But, sadly, he’s been gaslit for his entire career!
Yup so so sadly true. I remember getting told I couldn’t be allergic to nuts AND dairy, that was just ridiculous. Well I am and I’ve nearly died because of both. Gaslit pretty much all my life it’s normal. And the whole system is broken, you’re not wrong there. You end by saying he’s been gaslit for his entire career. Do you mean he’s been gaslighting or being gaslit? And I will never stop fighting for better awareness if it prevents anyone going through what I’m going through. It’s torture.