Seven Questions for Seven years with Catherine from @life_after_tsw

This post was completely unplanned and came about by beautiful accident after a woman called Catherine left me a comment under a photo I had shared on a TSW Facebook group recently where I talked about my favourite subject ever (giving it time). She said:

"It took me 7 years to fully heal. It was the hardest road I've ever travelled. Only time healed me. It's now been 10 years since I started TSW and in some ways I forget what I went through but it doesn't take much to remember. In many ways I'm grateful for my experience and what I have learned about myself and the world of medicine."

After seeing that, I knew I had to share her story. Not only is her perspective on TSW incredible, and aligns very closely with how I felt after coming out the other side, but the fact that it took her seven years to recover. 

It seems mad to me when I say that my TSW journey *only* took 26/27 months, but when it comes to TSW, unfortunately it can take much longer than that, and sometimes I feel I am unable to offer adequate support when I can't imagine how difficult it must be to go through TSW for seven years – especially the mental toll it must take. I suffered from doubt so much in the second year, so to keep going after many years, and still believe in this process, takes a lot. No matter how strong your resolve is, over time, the reasons why you started in the first place become a distant memory and you start seeing steroids with rose tinted glasses ... Saying that, if I'd had to go through TSW for seven years, I would, for the simple reason that I knew I had no other option left. It was either a lifetime of being suppressed by medication or take a chance at a life without said medication. I know that might sound scary, but to me, it was liberating knowing that I had to keep going because steroids etc. weren't the answer and just a quick fix that had got me in this mess in the first place.

Something else that I wanted to say is that I think we can lose sight of exactly what we are asking our body to do for us during TSW. This isn't something that can be rushed. Our poor body has to learn how to fend for itself again after sometimes many years of being suppressed by powerful medication. None of us should have to go through this in the first place, but when you go through TSW, try to remember this isn't something cosmetic and instead, a total body overhaul. This isn't a medical opinion, and instead some perspective from a woman looking back on a process that gave her back her skin. 

When Catherine sent me her answers for this post, I couldn't wait to share them with you all, and I hope it gives anyone struggling some hope. Another thing to mention is that Catherine unfortunately doesn't have any photos from the thick of TSW as they were stored on a hard drive that crashed. She has found a few though that she has kindly shared with us – one taken now, after TSW (above), and a photo of her eyes during a flare in the later stages of TSW.  

She also provided a photo of her skin last year (left) after she trialled a steroid inhaler when covid first broke out as she was worried about her health. Even though her body didn't react well to the inhaler, she is totally OK now.

She has also rather excitingly just set up an Instagram account, @life_after_TSW and I can't wait to follow her life after TSW!!

With all that being said, I'll hand it over to Catherine: 

1) Tell us about yourself and your skin journey, before steroids.

My skin journey started not long after I was born. My mum noticed rough patches on my skin when I was a baby. I was prescribed hydrocortisone at a young age, somewhere between the age of 2 to 5. I had mild childhood eczema behind my knees and in the crooks of my arms and used the hydrocortisone on these areas often until I grew out of my eczema around age 16. I had a stint of 4-5 years with no eczema at all but then when I was 20 I noticed dry splits opening up on my fingers. Years later I discovered this was a very mild form of dyshydrotic eczema.

2) What medication did you use and for how long?

I was prescribed many, many tubes of hydrocortisone throughout my childhood but it was the creams I was given between age 20-24 that did the damage. I started with a stronger steroid than hydrocortisone when I went to the dr for my sore fingers. Over time I was prescribed stronger and stronger creams. Around 2 years later I was waking up with swollen eyelids and was covered in a light rash on my chest, arms and back. The creams also seemed to 'bleach' my skin because I would have white dots and areas where I had put it on. That's when I took my first round of prednisone. I was to go on another round about a year later when I felt I needed a break from my terrible skin. This was all before I found out about TSW.

3) How did you find out about TSW?

After the 2 rounds of prednisone my skin rebounded horribly again and the drs I saw had no other suggestions of how to treat me so I gave up and went to a naturopath. I was given a whole assortment of creams and medicines which didn't seem to help me but did stop me from taking any steroids. I was put on an extremely restricted diet to try and rule out allergies and intolerances. My weight fell to 47kgs and I was extremely weak. Little did I know I was going through the early stages of TSW. It wasn't until 11 months later that I discovered ITSAN'S website and saw all the photos and read all the stories that seemed to match up with mine.

4) Tell us about your skin during TSW.

The first 11 months before I found ITSAN were horrible. I didn't know what was happening to me and no dr or dermatologist could tell me either. All my blood tests came back normal. I truly thought I was dying. I had what I now know were many panic attacks. Initially my skin was bright red and burning on my face, arms and legs. Over time these areas shifted around my body. The only part of my body that went unaffected was my scalp. I was extremely itchy. My skin always felt wet and hot. I had lots of tiny pimples covering large areas that could be popped. I had lots of elephant skin on my legs, wrists, face, arms, just about everywhere. 

A photo of Catherine's skin during a flare in the later stages of TSW.

5) How did your symptoms change over your seven year withdrawal?

My symptoms were definitely at their worst in the first year. Burning, redness, extremely sore hot skin. I had the nerve pain, too. I couldn't stand up for longer than a couple of minutes that first year though I somehow completed my post graduate degree! After that I was less red looking but was still covered in rashes that were persistent, especially on my hands and face. I had long flairs that lasted months with maybe a few days grace before another flare started up again. This went on and on over the years until maybe year 5 when the flares lessened in severity. Extremely slowly the intensity reduced but it felt like taking one step forward and then two steps back. Finally my skin was mostly clear by year 6 though I would still have the occasional flare on my face. By year 7 my skin was looking great. I have however not been able to get rid of the mild dyshydrotic eczema that I started with. But this is much more manageable and doesn't come close to dealing with TSW.

6) Did you find that anything aided your healing?

Time seems to have been the only thing that has healed me. I did stay away from a lot of foods as I had an extensive blood allergy test done in about year 2 of withdrawal that showed about 20 allergens. I now know that TSW puts your whole body out of whack so I am now fine with nearly all of those foods now. I mainly ate fruits, veges, meat and grains other than wheat. Whether this helped or not I cannot say. Alcohol would make me flare, so would chocolate, though I struggled to stay away from that! For a while I was making my own hand balm from beeswax, cocoa and shea butter etc which seemed to help my sore hands. Having my fiancé and then husband with me all the way helped enormously, esp when no one else would believe me when I told them it was my prescribed steroid creams that were doing this to me.

7) What would you say to anyone going through TSW who is scared of a longer withdrawal, like you had?

I would say hang in there. This is one of those times in life where things absolutely suck. Through adversity you grow as a person. Develop your 'I don't give a f#*! attitude about the way you look. Those around you really won't care what you look like. If you know about TSW Facebook groups and ITSAN then you have a wonderful guide to help you through your journey. It was such a relief to find ITSAN in 2011. It gave me hope. Something drs and dermatologists couldn't do. They said I would have to live with terrible skin for the rest of my life.

Surround yourself with kind people. Look after your body and try your best to find the good in everyday. Every day is one step closer to healing. The journey may be long but it is so incredibly worth it!

Thank you so much Catherine <3

To anyone struggling after many years, I truly hope this can give you some hope, and to anyone struggling during TSW, no matter how long it's been, know that you're not alone and this is all temporary. 

It gets better, give it time.

Cara x