I am so excited to be back with another 5 QUESTIONS WITH, and this time it is with the lovely Hayley from the Instagram account, @tswdailywithhayley. I have been Instagram friends with Hayley since early 2019 when she began her journey through TSW. She has now made a full recovery and I have been amazed by her kindness and positive attitude along the way - it's so inspiring.With that being said, I'll hand it over to Hayley:
1) Tell us a little bit about yourself and your skin journey.
My name is Hayley and I am 23! I am studying speech pathology, I love to travel and I live in Australia. I have had eczema since I was a child. My skin was at its worst when I was about 5 years old, when I had a bout of chicken pox that sent my eczema into a massive flare. Mum took me to the doctor, who prescribed very mild steroid cream for a short period of time. That was the only time I was exposed to steroids during my childhood. Around that time, Mum also took me to a naturopath who helped us manage my skin naturally through lifestyle and diet changes. For me, avoiding environmental and dietary triggers, and maintaining optimal nutrition was an effective way to manage my skin – and that’s how I did it for the next 15 years of my life. When I turned 20, I experienced a high amount of stress and my eczema flared up. At that point, I started using mild over-the-counter steroid cream on my hands, but eventually went to the doctor for relief because it wasn’t improving. I was prescribed a highly potent steroid cream, to be used for two weeks at a time. This worked for a while, but after each two-week round of using the cream, my skin got worse. I eventually had to go back to the doctor. I was then told to use it as often as I needed. The cream was effective in relieving my eczema – but only on the day I applied it. I noticed that my skin would erupt a day or two after I applied the cream, and each eruption was worse, and spread even further across my body, to places I’d never had eczema previously. I began to try other methods to clear my skin – clean diet, celery juice, naturopathy, nothing worked, and I was getting worse. I was devastated. Eczema had always been a part of me, but it never held me back from anything; I’d always been able to play sport, swim, travel, and wash my hands and body normally. My skin was out of control and I felt hopeless. Eventually I found my answer through Instagram. When I was searching for other people managing their eczema naturally, I found Cara Ward and Louise King, who had shared their story of topical steroid withdrawal. The symptoms they described were exactly the same as mine. I knew this was what was happening with me too. I gave up all steroids on February 17th, 2019 and what followed was about 11 months of an intense withdrawal.
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| Hayley during TSW |
When I was looking for ways to manage what I thought was severe eczema, I noticed some Instagram profiles that were describing “topical steroid withdrawal”. At first, I didn’t actually think I was going through tsw, like Cara and Louise had/were. I respected them and empathised with them, but I thought since I’d only used steroids as the doctor had instructed for a few months (eight, to be exact), surely, I wouldn’t have to go through that…turns out that’s exactly how topical steroid addiction starts – by following medical advice. There was a day when I had to go back to the doctor to get a medical note (to take time off university and work; something I’d never had to do for eczema before) and described my worsening skin to them. They offered more steroid cream, oral steroids and mentioned that steroid injections might be a course of action in the future. It was ridiculous. For 20 years of my life, I had never relied on medication. I knew I had a choice to make. I would have to live taking steroids for the rest of my life, or I would have to suffer for a while, hoping that I would get better. It dawned on me that whether I liked it or not, and despite the short length of usage, I had to go through a withdrawal too. As much as I couldn’t believe it, I felt sure I’d found the answer. I’d seen that people like Cara had made it through and I would too.
3) Did you find that anything aided your healing?Nothing was miraculous. I still went to a naturopath while I was going through tsw. I don’t think this was a cure, but I think it was a supportive of my nutrition, mental health and helped reduce inflammation within my body while my skin went through withdrawal. In my first month of withdrawal, I found long baths comfortable, but eventually I found moisturiser withdrawal more helpful – I stopped showering, bathing an applying moisturiser in the second or third month of withdrawal. At first, I felt tight, sore and gross, but after a couple of weeks I started to feel more comfortable. My mum and sister washed my hair once every few weeks, and I cleaned my fingers, armpits and other areas that needed it with antibacterial wipes in place of hand washing and showering (sounds gross, but it was the way I managed for about 5 months). Again, I can’t say that moisturiser withdrawal actually helped, or if it coincided with healing that would have happened anyway. After doing moisturiser withdrawal for 4-5 months, I thought a few products helped me continue healing; hyaluronic acid, jojoba oil, paw paw ointment. I don’t claim that these products were miraculous, but they made me feel more comfortable as I continued to heal and could tolerate more products. I found the sun highly irritating and made my skin more oozy, so I stayed away from it and covered up with hats, scarves and long sleeves if I went out.
The most helpful thing for my withdrawal was letting my friends and family know what was happening, accepting that I had to take time to rest, and allowing myself to be what the world would describe as unproductive. I stayed home as much as I could (quit work, and withdrew from university), and rested all day every day for about 5 months. I know this is not possible for everyone. I still lived at home with my parents during tsw, and they were absolutely amazing to me. I am ever grateful. It was challenging to accept support at times, but it was the best thing to do. Accepting the support of friends and family can be strange when you’re used to being independent, but it’s definitely a good thing during tsw, if you can. I watched endless hours of Netflix, listened to meditations, sat in the same room as my family at night (even if I couldn’t move), and spent a lot of hours on Instagram talking to others going through tsw. Honestly, those were the only things I could physically and mentally handle; I didn’t have much of a choice. Instagram was like therapy for me – I found so much hope reading the stories of others. I am in awe of the people in the tsw community. There were several ladies going through tsw at the same time as me, some are now healed, some are still in the process, but going through tough days knowing I wasn’t alone was really special.
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| Hayley now! |
4) Sum up TSW in five words.
Painful.
Burning.
Paralysing.
Renewing.
Releasing.
5) What positives, if any, have you found from going through TSW?
I feel a lot more resilient. I don’t think I realised it before, but I was quite a tense perfectionist prior to tsw. If I couldn’t do something perfectly, I didn’t want to do it. I would often give up on things if it didn’t go exactly to plan. Having absolutely no control over my skin was such an uncomfortable thing, physically and mentally during tsw. My skin literally fell off all over the place and I left a trail of flakes behind me that drove me mad. I couldn’t make plans because I didn’t know how long it would take to heal. I had no control and I had to let it be. I had to be kind to myself. There were some days when I thought I would die, and some when I wanted to. Being that down is definitely not fun, but I learned to get through the days. I learned to lean on others, and on my faith. I learned to appreciate the small things, like reading a book in front of a fire, or a cup of tea with mum. I was blessed by friends who visited me, saw me and loved me during tsw. It still makes me emotional to think that my friends and family actually do love me for me, not my looks. It’s such a unique experience to go through, and I’m grateful to have the friends I do, and I now love them at a deeper level than I thought possible. While I was in tsw, I read about other people’s resilience in life – I read The Diary of Anne Frank, The Whitest Flower (about the Irish Potato Famine), and other historical novels. I also read about people who have other skin conditions like burns, Harlequin Icthyosis, and others. I thought, if they can face that, I could face this. I was going to heal, and I held onto that. Gratitude grew. Ambition diminished. I now have a lot less ambition, and I don’t think that is a bad thing at all. I am still driven, but I know that things will happen as they’re meant to and I can’t control most things. It does cross my mind, especially as I complete my final year of university, that “I can do this. It doesn’t have to be perfect. I’ve been through tsw. I can get through this day.” I’m grateful for the resilience that has grown in me.
Life and health is a gift. People really do suffer in this life. I can now, like I was never able to before, in a small way relate to other humans who are suffering. Becoming acquainted with suffering and realising that I am mortal has been a blessing. It has brought me deeper into hope as a Christian. Deeper into trusting that there is a plan for restoration for all people. Our story is not over while we’re alive, and especially not over because Christ is alive. I hope and pray that anyone going through tsw finds hope in a future that is bright, but that there is also strength of today.1 Peter 2:24-25 (Passion Translation)
24 He himself carried our sins in his body on the cross so that we would be dead to sin and live for righteousness. Our instant healing flowed from his wounding. 25 You were like sheep that continually wandered away, but now you have returned to the true Shepherd of your lives—the kind Guardian who lovingly watches over your souls.
To follow Hayley's inspiring Instagram account, click (here).
Thank you so much Hayley <3
Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)
Nina Sloan (here)
Nick @Eczemacism (here)
Stephanie & Isaiah Quinn (here)
Stephanie @TheItchyConundrum (here)
Josh @Redskinrecoverydiary (here)
Briana @PREVENTABLE (here)
Melanie Lynch (here)
Stephanie Miller (here)
Holly Dillon @GetYourSkinOut (here)
Me (here)
Keisha Gregson (here)
Douglas Maddy & Charlie (here)
Gillian Breslin (here)
Jasmine and Jennifer (here)
Robyn (here)
Brittany Hallberg (here)
Emma (here)
Zip (here)
Imogen (here)
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