20 tips for being an eczema & TSW advocate

I’ve been advocating, sharing, fundraising and talking about eczema and topical steroid withdrawal (TSW) now for many years, long before I started this blog, so I thought I’d write about how you can advocate, whether you have eczema, TSW or skin sensitives yourself or not.

Eczema and Topical Steroid Withdrawal community – You don’t have to be a blogger, speaker or sharing everything on social media to be an advocate.

All of you lovely skin family supporters – There are loads of really simple ways you can make a big difference for us, even if you have fully functioning eczema, psoriasis, TSW, rosacea free skin. Even just being there for a friend and offering support, listening and understanding their struggles is a huge help to that person.

What is advocacy?

So firstly, what is advocacy and what can it look like?

“Advocacy is providing support for, or recommendation of particular relevant resources of help. It could mean getting support from an advocate to help you stand up for your own rights, or acting as an advocate to raise issues and become a voice for those who don’t have one or aren’t in a position to do so.”

Ruth Holroyd, Whatallergy.com

Advocacy can take many forms, and you can be an advocate in lots of small ways, or you can also seek out an advocate to help you if you are feeling lost, unsupported and confused.

So I’ve made a list of all the ways that I have advocated in the past, and more, so you can help those of us living with this life limiting condition.

A lot of you will already be acting as advocates without even knowing it. so to you all HIGH FIVE yourselves right now!

Thank you all so much, from the bottom of my heart 🙂

And if you think you could be doing more, I’m not saying you have to do all of these, just one. See what you think and choose something that works for you or that you’d feel comfortable doing. And if you’re feeling like you don’t either the energy or the time to advocate, there are still things that you can do show support that don’t take any time at all. And finally, if you need support, reach out. You are not alone.

1. Educate yourself – Find out what your friend or family member is going through, whether it’s severe eczema, topical steroid withdrawal or psoriasis. Ask them what would help them. Be in their gang. Have their back! Because trust me, it’s exhausting healing from topical steroid addiction. For me this also means going to conferences, events and exhibitions and absorbing everything I can. I am always learning about my own condition, so you can do this too for your friends and family.
2. Join online groups and engage – you’ll learn loads on all the different social media challenges. Follow a few of the top inspirational advocates on Instagram or check out the Facebook groups to find out what the hot topics are.
3. Sign the Petition to change treatment plans – Sign here to help us ban topical steroids as a first line of treatment. Thank you Mel for setting this up.
4. Keep up to date – Set some google alerts so you hear of the latest news, research and become a mini expert. I love it when my friends send me links to articles and news because most of the time I’ve often not seen it yet (I am a news phobic) so you’re doing me a favour and showing me you care!
5. Check out the charities – there are quite a few charities supporting those with eczema and allergies. Find out how you can get involved, read what they’re doing and get involved if you can. Can’t believe how many there are!
   • ITSAN – The US charity for Topical Steroid Withdrawal
   • Scratch That – A UK charity for Topical Steroid Withdrawal
   • TSW Assist – provides crowd-sourced recommendations for managing topical steroid withdrawal
6. Call people out – if you hear someone being disrespectful about someone’s skin or flippant about what someone is going through, call them out. Ask them if they know how life limiting TSW is. Ask them if they know anyone who has severe eczema or TSW and chances are they won’t. Share a bit of your story and ask them to be kinder and more respectful. You can do this politely and it’s much needed. It always amazes me how many people still don’t really know how awful and serious TSW really is.
7. Get reading – There are loads of great books out there to help you learn more, so if reading is your thing, this could be the one for you Check out My Top 7 Books for TSW. You could also source one of these for a friend going through TSW if you think it might help them.
8. Visit the a TSW Meet-up or March – You could arrange to join your TSW friend or family member. We have regular meetups and recently held a March in London. It’s actually really good fun and educational with loads of support, listening and learning from each other. Immerse yourself in our world and soak up some knowledge.
9. Plan something fun – With your TSW person in mind, take the control and choose a venue or activity that’s suitable for them and plan a day out with their safety, needs and requirements in mind. For instance find a safe place to eat that caters allergies if they have them or organise a safe free from food picnic. where they can remain anonymous and not have to face the general public.
10. Complain – If you hear people saying topical steroid withdrawal is not real on TV, radio, in the news, press, media of any kind, such as flippant comments, disrespect, incorrect statements, please write to complain, tweet or share your thoughts. By doing this we make those responsible for production more aware and accountable. We need awareness, we need people to hear about TSW and we need everyone to question treatment suggestions instead of just grabbing the quick solutions. Because the quick solutions can lead to whole heap of pain further down the line if you do get addicted.
11. Write to your MP – If you feel really passionate, you could always write to your local MP to raise concerns about the lack of support, poor referral rates, lack of funding. Every little helps.
12. Sign the Petition – You can support us by signing the TSW petition, created to ask parliament to discuss TSW. We need change, funding and more and we need 100,000 signatures! Sign the TSW petition here.
13. Donate – If you have the funds available, you could consider donating to ITSAN, they do amazing work supporting those living with Topical Steroid Withdrawal, from support over the phone, groups, training, raising awareness and online information. You could also donate to help with funding the TSW Retreat I am organising with a group of other TSW friends on 10th July 2022. Click here to donate.
14. Simply listen and support your allergy friend – You can be an awesome advocate simply by asking your friend or family member how they are, how they feel, what is troubling them. Be their friend, be their back up, be their support. They will probably put a brave face on things but it can get on top of people dealing with pain, discomfort and itching of eczema and TSW all the time. Be kind, be gentle. Be understanding and be thoughtful. Never judge, don’t offer advice, just let them be, let them breathe and let them heal in their own way, but you can still be there for them.
15. Build others up – The community is immensely supportive and nourishing. One way you can support us is to encourage, share content, comment and build up other skin warriors and advocates, bloggers, influencers, writers and anyone vocal and sharing their experiences, tips, great products etc. Together we are stronger and together we can all share what we’ve learnt.
16. Say thanks – When you see really good advocacy going on, say thanks to that person. Give them a like, a thumbs up, a huge thank you. It can be endless, tireless and sometimes feel like a drop in an ocean, but seriously we appreciate it. Thank you all!
17. Support the small businesses – There are loads of people going into business, inspired to provide something safe and previously missing for their child or themselves. Let’s support those businesses. We’ll miss them if they’re gone. I see so many brilliant initiatives fail or disappear after a few years and it always breaks my heart.
18. Become a volunteer – Offer your help for free at events, meetups, charity fundraisers if you have a transferable skill such as yoga, therapy, mindfulness, reiki, etc.
19. Learn how to how to treat eczema and skin rashes naturally – There are so many things we need to learn from the body. Rather than reacting with instant topical steroids we should be listening and observing skin rashes to see what we can learn, what does the body need? Things like dead sea salt baths, body brushing, Chinese herbal medicine, yoga, looking after mental health, getting allergy or skin patch testing done. Be questioning, be curious and understand your skin better.
20. Offer your help – If you see anyone struggling, anyone from a friend to a stranger, reach out and offer your help. You can find an advocate to help you through. If you need help, ask for it. ITSAN or ScratchThat would be good places to go if you’d like to offer help.
21. Send an anonymous gift – Think outside the box and find a gift you think might help someone who is unsung hero and tireless advocate. It doesn’t need to be a big gift. Anything from a little thank you note to flowers or skin positivity cards. For more ideas of suitable gifts visit my Discounts and Affiliate page here.

Actually, you don’t have to be doing any of these things at all, you could just be realising that this is a real, traumatic and worrying condition for a lot of people. All we really want is your understanding and respect.

If you’ve never met anyone with severe eczema or Topical Steroid Withdrawal before and don’t know what it means, just find out that simple fact and you’ll be huge steps ahead.

Just by more people knowing this is a serious condition, we make progress and it still amazes me that many people don’t know the dangers of topical corticosteroids..

To me advocacy is about inclusion, empowerment and community.

Are you an Eczema and TSW Advocate? Are you going to start being one? What are you going to do? Do you advocate in other ways? Who is your favourite allergy advocate? I’d love to hear your views. Please comment below…

You may also be interested in…

• The Shape of Skin – Eczema poetry
• Spoonie life – Living with a chronic condition
• Top 10 tips for caring with someone who has Eczema or Topical Steroid Withdrawal

Photo by Kelly Sikkema on Unsplash