Grateful/grieving/guilty

my experience with TSW

A week ago today, I should have been having the time of my life: on a girls holiday, in a stunning villa, eating the food of the gods (picky bits from a Spanish supermarket), and drinking sensational rosé that cost €15 but would have cost about £85 in the UK. But I wasn’t able to surrender to the joy of it fully, because I wasn’t entirely present: instead, I was fixated on what had happened on 6th September last year.

You see, my phone had — in that very helpful way that iPhones do — put together a “this time last year” slideshow a few days before. Included in this presentation, set to jazzy music, were the images I’d taken at the time to document the illness I was going through¹.

With the kind of detachment that a year of — if not recovery, then at least heading back towards better health — will give you, I looked at the photos and suddenly thought: Fuck. That was really bad. And as writing has always been catharsis for me, I think it’s time to get it out — especially as next week is National Eczema Week, and it’s a few days after World Suicide Prevention Day, which are both very pertinent to my experience.

So, a big TW/CW: discussion of medical issues, mental health issues, and suicidal thoughts.

Last year, I had I have TSW, topical steroid withdrawal.

Essentially, the steroid creams that I’ve been prescribed for eczema since my childhood are only meant to be used, cumulatively, over your lifetime, for a number of weeks.

I’ve been on them for years.

The symptoms are, quite frankly, horrific, and something I wouldn’t wish upon my worst enemy. A bone-deep itch, skin all over your body crusting and flaking, open wounds oozing and sticking to anything that comes into contact 24/7. You feel like you’re falling apart, because you are — your skin is literally falling off in front of your very eyes, in the most painful and disgusting way possible. On the rare moment that you go to smile or laugh, your skin re-cracks, re-splits, breaks, even though you don’t feel like you could be any more broken. Your barrier from the world has broken down; you’re totally exposed. I ceased recognising myself in the mirror; so then I ceased looking in the mirror at all, because what stared back broke me a little more every time. Because your skin is one of the main ways you regulate heat, I was sweating at the same time as having numb appendages; I had horrendous brain fog, and was constantly dizzy.

Those are just the physical effects. I couldn’t sleep, couldn’t sit, certainly couldn’t do much work or see many friends or loved ones. A combination of a particular medication and my scalp being affected meant I lost around half of my head hair, including eyelashes and eyebrows (and when your skin is reacting, you can’t microblade or draw those back on!) I couldn’t even pass the time mindlessly mining TikTok for crumbs of joy, because my algorithm was full of TSW content (which was incredible and is so necessary — but meant I couldn’t escape). Whenever my family asked me how I was feeling, I’d attempt a smile and say “Hoping I don’t wake up tomorrow.” After a while, they realised I wasn’t joking.

One of the problems with eczema is that so many things can cause it that it’s hard to pinpoint what will make it better. One of the problems with TSW is getting medical professionals to acknowledge that it exists at all.

For 6 months I went back and forth with doctors and dermatologists in an NHS that was trying its very, very best, but simply wasn’t able to help me in the way I needed. A year ago, after the photos that kickstarted this whole post, I went to a private dermatologist who, amongst other recommendations, seriously recommended that I move to Greece, because “nobody has eczema in Greece”. (Another helpful suggestion I got — though not from a medical professional, to be clear — was to get pregnant, because pregnancy often clears up any skin conditions. Pretty high risk strategy, my guy!!)

A year on, I’m on fortnightly injections that have literally given me my life back. I get them on the NHS, which is a godsend. But if I come off them, the TSW symptoms will come back — and they can take 7 years to heal.

So where am I at now?

I’m stuck smack bang in the middle of grateful and grieving. I’m overwhelmingly grateful for my health as is now, my partner, my family, my friends, every day I wake up and can look in the mirror, every time I move my body, and pretty much everything I encounter. (I saw a rat running at full pelt through the park this morning, and even that felt pure). I’m also definitely grieving a year of my life that I effectively lost and the many life moments within it — saying goodbye to my old flat and properly saying hello to the new one, friends’ birthday parties, and, looking back, the entirety of my trip-of-a-lifetime to New York, when I was incredibly unwell but didn’t yet realise it. I’m grieving my business growth, having just changed my branding and name weeks before I crumbled. I’m grieving my personal growth, in so many ways, including the spontaneous future I thought my partner and I might enjoy (though we had no plans to have kids any time soon, I am not allowed to get pregnant on my injection, which was a fun conversation to have last year).

I also feel guilt for not having come forward with this sooner. As I said, so many of the content I found from eczema warriors and TSW advocates online helped me enormously, and I feel cowardly for not documenting mine in real time to help someone else. But the truth is, it would have been from the — literal — wound, and I wouldn’t have been able to deal with it.

If you’ve got this far, thank you so much for reading. I’m not in a position to give any medical advice or recommendations, but I do wish you good health, healing, and someone who’ll fight your corner when you don’t feel able.

Here’s a link to some mental health helplines you can ring if you ever feel you need to.

Love,

Ellie x

1. I’ve since learned you can “hide” photos on your phone, so they won’t show up in recaps or your main gallery.