Another year has passed and I’m approaching four years in topical steroid withdrawal which is incredible really. I’m not healed completely yet but when I compare my skin to year three I’ve healed so much. I think last year started with my worst flare ever, but realising I’m still going through it so long after quitting is a bit heart breaking. We all dream of finding that cure, that instant fix, but that mentality is what got my skin into this situation in the first place.
All I want is clear skin
So many companies offer a cure for eczema but this often feels like being preyed upon. Targeting people who are so desperate for a break is cruel because there isn’t a cure. How much have you spent on products that claim to fix your skin and heal you? A lot of money!
Perfect eczema free skin possibly not even achievable for some of us. But what IS possible is finding things that can help, bit by bit, to give you calmer skin,
What’s helped me heal and ways to stay positive
I wanted to use this blog to share what’s helped me and also share some positive advice for living with a chronic skin condition. A quick google showed that there is very little written about this, just lots of advice on how to cure your skin, get rid of eczema and maintain clear skin as if that’s always the ultimate goal. But what if we never achieve what we dream of, perfect skin? What if perfect healed skin is unachievable and a toxic message; that we are less than if we don’t have a porcelain complexion?
Let’s ditch that mantra of perfection. Look instead for a functioning skin layer and explore simple skin care regimes. The industry built up around beauty, cosmetics and skin care is an expensive trap and in my opinion, entirely unnecessary in most cases. So here goes, my top 20 eczema and sensitive skin resolutions.
- Accept your skin – This is a tricky one because you absolutely don’t have to like that’s it’s sore, open. dry, itchy and painful. It’s OK to not be OK with that part of it, but the present situation is what it is, so accepting that this is where we start and this is the way things are at the moment can be really helpful. If you spend your time feeling angry and in a fight and battle mentality that causes more stress, which in turn can compound the problem.
- Learn to bloody love it! – this takes time, to love yourself when your skin is in a flare or a melt down.
- Stop trying so hard to fix it – It’s easy to throw everything at healing, to try all the things you can but this can get very confusing, and you might be spending lots of money on things that just don’t work. Instead try to find some
- Don’t obsess over flares – if you’re in TSW it’s often just a sign of healing and even with eczema, it can be stress or worries that trigger a flare. It may also happen for seemingly no reason. Try to let of or always knowing what causes flares. Get to know your skin, sometimes it’s possible to pinpoint a culprit or trigger but it’s also important not to over analyse everything. People can often end up cutting out whole food groups if they get obsessed with what they’re eating being the cause of flares. Food can 100% be a skin flare trigger though but you need to be scientific. You might be interested to read Identifying skin triggers for eczema flare ups.
- Clean up your life – Think about everything you bring into your home, from food to skin care products, cleaning products and even luxuries like scented candles. You might be find with them, but it can be hard to separate causes when you seem to flare all the time. Consider swapping to natural skin care brands, eco cleaning products and switch from scented wax candles to beeswax or soya ones. Candles can be full of chemicals and artificial fragrances. If you start with just one thing and work your way through your life bit by bit it should help you reduce inflammation over time. Don’t get too stressed about this, just use up the stuff you have and slowly swap stuff out.
- Find the gratitude – this is a tough when you are really struggling, but honestly it was a game changer for me. At my worst times I could find so much gratitude even for the chance to heal, or try to heal myself. I have no dependents so being able to just dive into healing is a luxury not everyone has. Think about your surroundings and the safe home you have to heal in, the dead sea salts you can buy and the people who support you. There is so much to be thankful for as we allow our skin to heal.
- Report Medication – It’s now a simple process but I would urge anyone who feels that any medication has damaged them in any way should report it. Whether it’s topical steroids, protopic, dupixent, methotrexate or Tralokinomab. If you think it’s harmed and not healed please report it using the Yellow Card Scheme. Read Reporting medication using the Yellow Card Scheme.
- Be kinder to yourself – You are going through a really hard skin condition, so think about being as kind to yourself as you would be to a small child, or the child version of yourself.
- Become hardcore at self care – This is something I never learnt growing up and it’s one of THE best things to master. I used to find it so hard to rest, relax and do nothing. It felt like I ‘should’ be doing something, like exercise, cleaning, creating, working, socialising. But learning the power of silence and discovering what my body needs to tune out and relax has been so helpful. It’s different for everyone so you need to find out what recharges your batteries and work it into your daily life. For me it’s things like making time to read, listening to audio books, yin and restorative yoga, doing a jigsaw puzzle or adult colouring with no gadgets in sight. A long walk in the countryside or a trail run in the mud followed by a long soak in a dead sea salt bath. Get good at self care! It will help reduce anxiety and in turn reduce the itch and inflammation in your body.
- Is past trauma affecting your healing? – This is so important. Learning to forgive all the parts of me, the child version of me, the teenage version, all the different parts of me that I was either ashamed of, disappointed with, angry at or just sad about. I hadn’t worked through much, even with therapy. I found by unpacking trauma and sitting with it and letting it be OK that I did this or that. I was trying to keep myself safe and it was my body’s way of protecting me. Research Family Parts Trauma therapy and forgive all the parts of you that are holding onto tension, stress and pain. It might not work for everyone but I found it really eye opening and fascinating what came up for me.
- Stop apologising – You have nothing to be ashamed of. If you are apologising about having eczema or flaring, having dry flaky skin or oozing patches stop it right now. I find myself doing it myself. I apologise for having allergies when I order food. If there is one thing I’m going to try really hard to STOP it’s apologising for existing. If you want to forewarn friends you are struggling that’s fine, but don’t apologise for it. Letting people know does help because they can make allowances for you but there is nothing to apologise for. Would you feel you had apologise for having cancer, MS or diabetes? Or for being deaf, blind or a wheelchair user? See if you can pause when you feel like apologising and reframe the sentence.
- Stop saying, I have eczema, I have TSW – You are a person going through it but you are no it! you don’t own it and it doesn’t have you. It’s a subtle shift but for me, stopping saying ‘my eczema’ or ‘my TSW’ has actually been a bit of a game changer. This is not permanent and everything can heal. Think of it like part of a journey. It all changes all the time, so your skin can too. It knows how to heal scabs and it also knows how to heal eczema. Visualise it healing and see yourself in the future with clear skin. Think positively that you can heal and that your body knows how to heal all the time.
- Find Hope – A diagnosis with eczema can be incredibly cruel because if it isn’t simple and doesn’t heal easily with mainstream treatment people are told there is no cure, that they just have eczema and must take the medication for the rest of their life. The medication can and does then cause very serious and debilitating side effects. Compare this with a cancer diagnosis; whilst this can be fatal many patients do heal through treatment and also get a lot of support through their healing. They are encouraged to believe, given hope and time scales for their healing. Eczema is a life sentence for many of us and a horrible one at that. Topical Steroid Withdrawal is quite honestly the worst injustice and a shit show for people going through it, dismissed, gaslit and belittled by the professionals who should be helping us.
- Reduce the damage done by scratching – The reason that doesn’t say stop scratching is because that would be an impossible ask. Eczema and particularly the bone deep incessant itch of TSW is relentless and you can’t ignore it. However there are different types of itch and ways to reduce the damage you do. For instance
- Wearing cotton gloves or tubular bandages at night
- Using a Cosi Care star or ice pack on itchy skin to halt the itch.
- Keep nails short. Some people get acrylics or gel nails because they are blunt and do not rip the skin though I’ve never tried this myself. I use the blunt of my tweezers or a teaspoon and can scratch with breaking the skin.
- Read The 10 different types of itching, 30 tips to help you stop scratching and Mindful scratching for more insight.
- Let’s normalise different skin – What if your skin doesn’t heal. Many people live with permanent facial differences whether it’s a congenital condition they were born with or scars from burns. They are often also some of the happiest people you’ll ever meet. To read about one of my favourtite positivity experts Jono Lancaster and his Love your Face campaign, Read Let’s stop eczema bullying.
- Get your skin out! Don’t hide your skin, and certainly don’t feel you should have to. We often cover up what we think of unsightly eczema and psoriasis with long sleeves and trousers. You have just as much right to enjoy the feel of the sun on your skin. In face 20 minutes of direct sunlight on your bare skin is good for it. Try to embrace your scars, pigmentation and blemishes. They make you unique and tell the story of your life.
- Skin positivity – This is kind of linked to the above, but it needs its own bullet point. If you can love your skin while it’s at its worst, you can find deep empathy for yourself and what you’ve been through.
- Become an expert in your own skin condition – Read all the can from reputable sources, learn about the skin and the science behind why we itch, food for the skin etc. The more you can understand the more you can do to take back some of the control over your own body.
- Get the treatment you want – No matter what type of healing you choose and whether you are going all natural or seeing if other treatments can help, find out what’s out there. Do your research and decide what you’d like to be doing for your skin. Anything from getting allergy testing done, UVA and UVB light therapy and other immunosuppressant treatments. These come with side effects so be sure you understand and look out for them if you go down this route. Read Getting the most out of your dermatology appointment.
- Ditch the paraffin emollients – I know from bitter experience how hard this is. I used to use a 500g tub or Epaderm every week. I was a hardcore paraffin user. These emollients really did help me though for many years when nothing else was OK on my skin. However since going through TSW I have now given up paraffin emollients too. I did this 3 years ago and now hardly need to moisturise my skin. In fact, it doesn’t need much at all. I do use Lyonsleaf and Balmonds on sore areas that need help healing. Check out my discounts page for codes to try these two brands and others. And when it’s very dry it does help to apply some oil or balm. Read The problem with paraffin emollients. Don’t hate me, and take your time. It took me three years to build up courage to do this, I had used them solidly and intensely for so many years that I was terrified or letting go. I think I had a withdrawal from these emollients in October 2021 which lasted for 6 months but I will never know if that was just more TSW. Paraffin is also a huge fire hazard for anyone who smokes or has bare candles, it can be hard to wash out of clothes and bedding so if you do use them, wash clothing and sheets frequently and be very careful around fire. It is quite liberating now having to take that huge tub everywhere with me.
Anyway I hope some or all of these help someone. Just choose one or two that resonate with you. Be brave, be strong, be kind and be gentle with yourself. You are stronger than you think you are. To get through all the days you already have with eczema makes you a super star, so keep going. It’s a journey to discover what works for you and I really believe that we CAN all heal, or at least get to a point where our skin isn’t in control and we have our lives back.
I’d love to hear your resolutions! Please share them below.
Ishbel says
Hi Ruth, Read this article with interest. I’m going through tsw, it will be 3 years this coming April. Do feel I’m stuck in a cycle of waking up covered in dry thick flaky skin, hot bath and exfoliate and moisturise with Hydromol ointment, just like Epiderm, yes, I’m an addict as my skin is so very dry. I know that I’m just cycling this and not moving on, thing is when I wake up I automatically start scratching all the flakes off and so feel the need to get in the bath and exfoliate to feel more human, it’s a vicious cycle. Just looked at the ingredients of Balmonds and there are so many ingredients there, not just beeswax and I’m afraid I may react to them. How did you wean yourself off the thick Epiderm, I feel so tight after a bath I need something. Has your skin stopped thickening and flaking? Hope this year brings us more healing x
Ruth Holroyd says
Hello Ishbel, I’m so so sorry you’re going through this too, it’s pretty rubbish isn’t it? Congratulations on making it to 3 years, you rock! I’m not at 4 years next week! For the first 3 years of my withdrawal I was hooked on Epaderm and was lathering on, getting through about 1 large 500g tub a week. It was crazy. So a few things, you can add stuff to your bath to help stop the skin from being so dry. Have you looked into colloidal oats, dead sea salts etc. in your bath water?
Don’t beat yourself up for rubbing off those flakes, I do it too. They feel so horrible. I can sometimes leave them and can stay calm sometimes but usually I’m picking them off. I can’t help it. It’s normal and it’ s OK. I would suggest getting a sample pot from balmonds to test before trying, I’d do that with any product. Some people make their own skincare products and I’ll blog about that soon. For me I’m too lazy to do that. But what did happen, when I quit the epaderm was another massive flare. I don’t know if this was just TSW or whether it was withdrawal from the paraffin emollients but I suspect it might have been the paraffin. I hate that it was and can’t prove it but it was intense. It lasted about 5-6 months but I did get through it. I need to do a blog about this because it was so hard. Really hard to do. I’d literally lived on the stuff for so long. Now I don’t put much on my skin at all. I’m still cycling but it’s mild now. I do put some balm on my face after a bath but it’s minimal and I only really need to do this on my face and any problem areas. Most of my skin is so strong now. It’s amazing to watch. If you want to chat about this let me know. I found it very hard but don’t regret it all. Epaderm isn’t cheap either! but it is cheaper than Balmonds and other natural emollients. I also love Lyonsleaf.
Use code WHATALLERGY for 20% off Balmonds and WA20 for 20% off Lyonsleaf.
Good luck and I hope you don’t flare like I did. just know, if you do it does heal and gets easier. I go out more days with no tub of cream now. Something I’ve never done in my life before really.