I am terrified that Topical Steroid Withdrawal is here to stay. That I’m going to be stuck like this, struggling to heal, in pain, with dysfunctional skin. Itching, shedding, flaking, cycling through flares, losing sleep and feeling like I’ll never get better and heal.
It’s like a nightmare that keeps replaying.
Not helped by my recent visit to the dermatologist who refuses to discuss TSW with me, won’t entertain putting it on my medical notes and pretty much doesn’t think I’ll get better without topical steroids or new drugs like Dupixent and JAK inhibitors. These scare me just as much at the topical steroids, they’re so new we really don’t understand the long term effects fo them either. Just more drugs to suppress the body so all we do is ignore a natural skin reaction.
Read Gaslit by my dermatologist for the last time.
What if I never get better?
All the symptoms are horrible, the pain, itching, shedding, oozing, nerve pain, elephant skin, insomnia, anxiety and depression, to name just a few, are exhausting and uncomfortable.
I can’t remember what life was like before TSW. I’m so deep in this now, three years and two months and there is no turning back.
I just feel so lost right now.
I keep telling myself. This isn’t forever. It will pass. I will heal. I AM healing and I will continue to heal.
That it takes time and I used topical steroids for a long time, and Protopic too.
I think I am getting better, I’m sure I am, but after such an awful relapse from October last year until Jan/Feb this year it’s been tough to remain positive.
I try to face each day smiling and optimistic and I can see that I’m achieving more, going out more, walking and running more, so I know that I am getting back to normal.
But my face and neck just hurt, all the time. Every day I shed layers and layers and every day I clear it up, hoover and clean the bed.
And I have no idea how much more of this I will go through.
How long should it take to heal?
Some people heal in months.
Some heal in six months.
Some people take a year to heal.
Others take two years.
From a recent episode of the TSW Podcast, I’m expecting perhaps 3-5 years for me, having heard Dr Marvin Rappaport explaining his thoughts on TSW healing. So that gives me a goal, it just seems far far away and I just feel like I should be doing better by this stage in the healing journey.
I’m trying not to compare my journey to anyone else but it’s so hard. The what ifs. The doubt. If I did this, drank that, ate celery juice (yuk!) or did red light therapy daily I would be healed now.
Why I think it’s so hard
I can see that there is progress, I am sleeping better, I am less red, I am doing more and going out more and able to take part in more, but every now and then I am in so much pain it takes me right back to the darkest days.
Some days I am so itchy that it brings back the fear and makes me feel I’m going backwards.
Despite the fact that I am itching less, and the itch attacks last less time, the PTSD makes it horrendous. Because I don’t really know what I’m doing. I’m blindly trusting and going on with this because some other people online did it too and I thought it looked like a good idea. How is this ever going to make sense? We are always going to doubt when we do not have a diagnosis from a medical professional and also don’t have support and reassurance from anyone either.
The shame of being a long haul TSW healer
I see others healing faster than me but mostly they are much younger than me. I hear things like, NMT helps you heal faster, eat this, don’t eat that, take supplements, don’t take supplements, believe you’re healed and it shall come to pass.
It all just makes me feel like I’m doing this all wrong.
Like if I was more positive I would be healed now.
And if I was doing my best I’d be further along the path to ending these horrible cycles of inflammation, crusting and excessive shedding.
I’m tired of this now. Bone tired. I don’t feel like I can talk to anyone about it because I feel like a broken record. People think I’m better now, especially those who saw me back in August when things looked so good.
“Oh I thought you were through the steroid withdrawal.” was what one friend said to me this week when we caught up.
Nope! Not yet.
I’m embarrassed to tell people how long
I hate admitting that I am now three years into Topical Steroid Withdrawal and still flaring and deep into healing with poorly functioning skin.
Particularly people new to TSW or those who think they may be addicted to topical steroids. When they ask me how far I am into the TSW journey I can see the fear and horror on their faces when they see how bad my skin still is. I feel terrible, like I’m encouraging people into this hell.
Yet I’m not a doctor so what do I know? Sometimes the sheer number of people with questions about TSW is overwhelming and I feel so unqualified to advise anyone.
I need a break. I need a sign.
I know it just takes time, as our leader Cara Ward is always telling us, but how much time? How long do you have to sit on the side-lines watching life go by… wishing you could live again. Cara has healed from TSW and now has the most amazing skin.
Healing from topical steroid withdrawal just takes time…
Cara Ward, TSW Survivor
I’m sorry this has been such a negative blog, I just feel I need to be honest. I’m finding this really hard right now. I’m losing hope but trying to cling onto it. This past few months it’s been really hard.
I have been working on my mental health and found hypnotherapy to be really empowering. I’ll tell you more about that in a future blog post. I’m also doing a Mindfulness Based Stress Reduction course with my yoga teacher Tawny Cortes which was really helping, but this week I just lost it, fell off the mindfulness wagon and it all just seems too hard.
You are not alone, it’s OK to find TSW hard
So if you are struggling too, you are not alone. It’s OK to find this hard. It’s OK to feel hopeless and confused. It’s OK to let go of all the fighting and accept what comes to pass. It’s OK to have bad days and you don’t have to be endlessly positive all the time.
For all the bad days, there are good ones. And as I sit here finishing this blog it’s the following day and I’m feeling much more positive, not in any pain, only a little bit dry and itchy and feeling so proud of all that I’ve achieved whilst going through withdrawal, including writing and publishing two books, continuing to raise awareness of allergies and topical steroid withdrawal and eczema, working freelance and getting out to enjoy life as much as I can. It’s important to remember TSW healing is not linear, it’s up and down and back and forth and can drive you crazy second guessing and trying to set your own dates and deadlines to be healed by. For me, now I’m going to try to accept things as they are and let it be as it will. I’d love to hear, how is your skin doing? Are you also going through topical steroid withdrawal?
I find it impossible to distinguish between TSW or if it’s just the eczema itself coming back. If I don’t use a mid-strength topical steroid 2 or three days per week, my eczema spreads over much of my body. My derm says that I am not addicted to topical steroids, but I have found that derms are really bad at treating eczema — all of them are bad.. A low slaicylate diet has helped me tremendously, but I just can’t get passed more than 4 days without having to resort to topical steroids.
Hi Greg, if you are getting a rebound flare on stopping using the topical steroids then you are possibly going fast into TSW. It’s such a cruel withdrawal because it makes the skin so bad. Eczema should not ‘spread’ around the body like this. There are many symptoms listed on the ITSAN website that help to distinguish what’s going on. TSW is different in lots of ways. I got nerve pain or zingers in TSW, incredible itching just on another level to anything I’d ever had with eczema. Then inflammation that turned into excessive shedding. Loss of collagen, sagging and baggy skin, elephant skin, so thick it feels like leather, inability to sleep, pain so bad, splitting skin, ooozing skin. The list goes on. Visit ITSAN for more info here as I’m not a doctor and cannot diagnose you. Sadly doctors can’t diagnose you either as they are just in so much denial. https://www.itsan.org/
It’s just wrong on so many levels, the gaslighting and inability of these professionals to do the work and educate themselves.