What if I never heal from TSW? Long Haul Hell!

Going through topical steroid withdrawal (TSW) is hands down the hardest thing I’ve ever decided to do. I was going to write ‘done’, but it’s not done yet. At nearly 4.5 years in now I’m still experiencing TSW symptoms:

Inflammation on my face, called red face syndrome
Facial swelling that cycles into crusting and flaking on my face
Loss of all my eyebrows again for the fourth time. I don’t like how I look without eye brows.
Collagen stripping and deep crevices, like wrinkles but not the same as they itch deep inside
I don’t like how i look in the mirror. I look ill, old, red, puffy and it makes me so sad.
Red sleeves, typical of TSW. These I can handle, wrap, bandage and treat until the cycle passes.
Open oozing wound on chest (this has just closed up and stopped oozing as of today so let’s celebrate the small wins!) When you’re just pleased your boobs have stopped oozing that says a lot about the general effort of every day life with TSW.

I can handle the rest of my body because I can cover, bandage and hide it much more easily.

The face is often the worst affected area in TSW

It’s just my face that breaks my heart. And please don’t comment below, but you look fine, fab, pretty… whatever… I may look all those things to you but how I feel about my appearance is very real and cannot be dismissed with some kind comments.

I see people staring, double takes and looking for just that little bit too long. I get lovely comments on posts on facebook saying things like, “are you flaring again? what caused this latest flare?” or “you look so much better”. Should I take these comments better than I do? because both annoy me. I know I’m flaring so please don’t ask me about it. If I want your advice I’ll ask you. And the compliments are so difficult to explain… sometimes I’ve spent hours deflaking in a dead sea salt bath and it’s the only day I’ve felt good enough to venture out… so what you don’t see is the carnage going on at home behind closed doors. It’s then very hard to be honest that things are not ok.

Find anything else to discuss with me, but unless I mention it, don’t make it my appearance… good or bad. I know this sounds messed up but I think I am very sensitive, and very proud to be sensitive. It gives me so much empathy for others. Just maybe take a few seconds before writing/speaking and avoid the elephant in the room!

Why it’s so hard going through TSW

It makes me feel triggered in so many ways. Seeing others heal, seeing people doing better, feeling a need to share but an overwhelming apathy that it’s boring to be still going through this. How does it help anyone to hear it’s still not healed?

Why is this still happening to me?
Why haven’t I healed yet?
It triggers others who can’t believe I’m still going and approaching 4.5 years in TSW
- I get direct messages and comments from shocked and horrified people that I’m still not healed That’s not easy to hear.
It is exhausting
- I have lost so much income and struggle to pay my bills because normal work is too hard
- Sleep is affected and disrupted
- Daily life is often a struggle
- I worry every day what my skin will be like
- It hurts
I’ve forgotten what normal life is like because every day is consumed from the moment I wake to the moment I sleep with managing my skin.

Positivity has got me this far so it can get me all the way

Safe to say, I am usually a very positive person but I’m finding things hard at the moment. Probably compounded by a lack of finances so I am not eating quite so much fresh produce because my food budget each week is tiny. I have to spend on my essential dead sea salts and favourite safe skin care products, but otherwise can’t buy anything extra. However I am finding confidence in small joys and tiny improvements

Learning how to manage itching and minimise damage from scratching is my super power
Self care and self love are now my favourite hobbies
I try to walk and do some yoga stretching every day – it really helps
My skin can heal so it will heal again

Here’s some random pics of how my skin looked before and during TSW

Healing from topical steroid withdrawal is not linear, I have seen some incredible healing only to relapse again. But I know I will heal. I’ve seen others heal and know it just takes time.

A total lack of any support

It’s harder because if you’re going through TSW you don’t get any support or recognition, apart from a few people who have been diagnosed.

No diagnosis
Dermatologist refuses to discuss
No support or advise from anyone in the dermatology profession
No support from the NHS now since I’ve stopped using any mainstream medication, I now have to buy everything myself
£1000’s spent on natural skincare, dead sea salts, bandages, tubular bandages, gauze, tea tree oil, ear cleaning procedures, therapy, all out of my own pocket.
No support from my previous employers who basically made it uncomfortable and impossible to stay working – asking for help and telling my boss I was struggling resulted in one of the most humiliating meetings of my life. I decided to leave because I was then so poorly, not sleeping and bandaged up most days, crying in the loos. There was no support there and I decided to find rest and self care by leaving the job. It’s a long story.
Lost income as I don’t and cannot now work full time

I am feeling a bit sorry for myself this week if I’m honest. It’s increcibly hard going through this on my own.

How long does it typically take to heal from TSW?

It can take anything from 6 months to 10 years. There are so many things that can impact healing and we just don’t know enough about the condition yet. How much, what potency topical steroids, how often used, where used, how long used for… it’s endless and no one was monitoring or recording things. I can’t remember at all now what exactly I used but I know I was very sparing in my use. Something always made me feel uncomfortable using the creams.

Fellow TSW survivor Kelly took ten years to heal. My friend Nina has been through 8 years in TSW and is still healing. There are so many of us in the 3+ years stage and I would call all of us long haulers. If you’re a long hauler please share what helps you get through this in the comments below – I could do with some cheering up.

Thanks to everyone who has been there for me xxx

I have some wonderful people who look out for me, help me and support me. I really am eternally grateful. I am doing OK too, I trust and hope that I will heal, because every year I think it’s easier. My healing crises are not as bad each time, but this one is pretty tough. I just don’t want to be seen, to witness the double take at my red, swollen or crusty and flaking face. I just want it to end.

And right now there is no end in sight. I think not having any idea how long it will take you to get better is one of the hardest parts of this healing journey.

Grateful for every silver lining and small victory

But having written all this down I do now feel a little better. I have a wonderful TSW whatsapp group which is a safe place to vent and share and they honestly keep me sane. One guy, Gav commented today – every second, minute, hour that you managed to not scratch is a win… so yes. there have been so many improvements. I am not itching all day and all night any more and can get a good amount of sleep so TSW can take my face and my eyebrows again it is likes. I am here for the long haul.