Today's guest blog is by Holly Broome of Scratch That, an online campaign for Topical Steroid Addiction awareness in the UK. Holly explains just how important an online community can be for people going through TSW.
Topical Steroid Withdrawal as a condition is not currently recognised or treated by doctors in the UK. Most of us are met with blank stares when we mention the condition to friends and family, and that’s expected. But imagine how we feel when we are met with the same expression from a doctor. We receive little to no support from the NHS, and unfortunately most of us have had very negative experiences trying to get doctors to understand and respect our decision to come off steroids. This lack of support means we only have each other to turn to.
And where do we find other sufferers? Online.
When I first started recovering from TSW a few years ago, I felt a strong urge to support other sufferers as best I could. I felt like I had this responsibility to spread all the information I’d learned about TSW and how to cope with it to as many people as possible. I discovered the Instagram community which is all about support and skin positivity after feeling lost and confused by the often toxic Facebook groups. Instagram is an amazing tool; you can use it to give yourself a voice and get your ideas out there and that is so empowering.
I decided to open up about my skin online which felt incredibly liberating. I posted photos that only a few months previously I couldn’t even have looked at myself. But I couldn’t keep them hidden away, because they revealed the reality of this condition in a way words just couldn’t. Many people started coming to me with questions, the general consensus understandably being one of fear and confusion. Having made quite a significant recovery from TSW, I felt I had an insight into this condition that could help others who were still in the dark.
When new people join this community, terrified and bewildered, they will literally try anything to get better. This unfortunately can often be at the expense of their own comfort and happiness.
Everyone tries stuff at the beginning, but for some sufferers trying to find a remedy that actually helps becomes all-consuming. Topical Steroid Withdrawal well and truly takes over your life and robs you of your independence, so all you have to focus on is trying the next thing that might help.
I certainly spent a lot of money on alternative medicine and diets myself. I tried herbal medicine, the eczema diet, all the supplements under the sun, the list goes on... Nothing made a single bit of difference. I now don’t believe that anything relieves the symptoms of TSW; it's just a process one's body has to go through naturally, at least for the first few months while the steroids leave the system. The only thing that aided my recovery was trying to keep as comfortable as possible. This involved leaving my skin alone - a treatment specifically for TSW known as ‘No Moisture Therapy’.
On Instagram I was receiving some very worrying messages from fellow sufferers, and seeing posts that concerned me greatly. They were forcing themselves to be on very restrictive, extreme diets in the hope of seeing improvement in their skin. On Instagram there are so many accounts with huge followings that promote the idea that ‘food is medicine’. I believe that this is a seriously harmful message to be spreading. People become obsessed with every single thing they eat, and associating food with guilt and fear leads to disordered eating. You have a massive responsibility to your followers on Instagram, I just wish more people realised this.
My Instagram quickly transformed into a campaign against harmful pseudoscientific accounts because I felt like they were preying on our desperation as a community. The fact is, we already know what we need to do to get better, but understandably we lack confidence and will try anything for relief from the pain and discomfort.
My mission is to empower people with information they need so they can build confidence in decisions regarding their skin, without being waylaid by the bombardment of misinformation you get online.
Many TSW sufferers feel totally let down and start to lose faith in any kind of Western medicine. But despite this, it’s incredibly important that a good relationship is maintained with your GP throughout TSW as you will need their support if your skin gets infected. If they are a good GP, they really should support your decision to come off a medication which you believe is no longer working for you. Even if they don't believe in TSW, they should continue to support and listen to you.
Ultimately when it comes to TSW there are no rights and wrongs. Be as kind and gentle towards yourself as you can be - if the diet or remedy you are trying isn't working and is only making you miserable, is it really worth it? Aren't you already suffering enough?
Holly Broome is a 24 year old graphic designer currently living and working in London. She grew up in the countryside near the Cotswolds and has struggled with eczema since birth. Holly went through TSW in 2018 and charts her journey as tsw_hollybee. SHe's also a founder of TSA campaign, Scratch That UK.