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.
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.