As part of Balmonds commitment to sharing the stories of real people living with chronic skin conditions, we asked Ruth Holroyd of What Allergy to tell us her eczema and TSW story. Here are her interesting and informative answers!
Can you give me a little bit of background to your eczema story, for example did you or anyone else in your family grow up with eczema?
I grew up with eczema and can’t remember not having it. Both my sister and I both had eczema and asthma and one my earliest memories is being told off for scratching. Back then there were no natural skin remedies or emollients available and the treatment given was steroids. Now, in my late 40s, I’m cutting out topical steroids and exploring more natural, healing and caring ways to treat my skin. It’s a life’s journey and one that everyone who has eczema will relate to; you’ll do anything to help heal your skin. It affects every aspect of your life, from your self esteem and views of how others judge you for it, to the sheer monumental effort it takes to care for atopic skin, from getting up, cleaning up flakes, exfoliating, bathing daily, moisturising regularly and self care to help with anxiety, tension, stress and positivity.
When did you first start showing signs of eczema?
As a child of about two I think, I used to scratch so bad, the bed sheets would be covered in blood and there would be a ring of dry flakes around the potty, one of my favourite times to scratch apparently. I still sneak to the loo, lock the door and indulge in secret scratching now…
What products were you using at first?
The products on offer when I was younger were quite limited and looking back, were probably making my skin worse. I remember having Oilatum baths which contained peanut oil back then – possibly how I became allergic to nuts. Also Aqueous cream and E45, the first line of defence for eczema, which are awful for my skin. We used to refer to it as our ‘stuff’ which sounds funny now. Have you put your stuff on? Where’s the stuff? Then of course the journey into the world of topical steroids began… from Hydrocortisone to Betnovate and Elocon.
What was your experience with using conventional eczema treatments?
I’ve not had any lasting success to be honest. Steroids were like a miracle at first but now I’m paying the price for that; I am one year into topical steroid withdrawal. I also used Protopic on my face for about seven years. I also cut out Protopic in April last year because I felt that that too was just a mask that quickly stopped having any effect if I stopped using it. Methotrexate seemed to work but wasn’t the miracle cure the doctors hoped for, it eventually reduced my immune system so much that I came down with the worst bout of shingles I’ve ever had. The pain of that was indescribable and I never want to experience it again. I had to stop using Methotrexate in September last year.
How do you manage your skincare on a day-to-day basis now?
Now I try to keep an eye on my diet and make sure I’m hydrated with plenty of fruit and vegetables, reducing the red meat consumption and also cutting out all processed foods. I now try to only use natural skincare and bodycare products where I can. I do use Epaderm simply because it isn’t an irritant to my skin and I can get it on repeat prescription. I use so much of it that I would struggle to afford the equivalent of the products I’d love to use. I use Balmonds Skin Salvation and also find the tea tree lip balm is great all over and particularly on any really nasty patches. I have regular daily Epsom salt baths, try to exercise regularly as sweating and being active seems to really help. I also practice mindfulness, regular meditation, yoga, gratitude journaling and relaxation techniques. For me, if I’m anxious I’m also itchy. There is a direct link, so I work really hard at avoiding my stress triggers, being more caring to my skin, gentle and nurturing. I realised I was scrubbing it, tearing at it and almost loathing my skin. I hated it and that seemed to excuse the awful way I treated myself. Now I’m learning to love my skin, even if it’s having a hard time. It’s only trying to help me so I just need to learn how to help it do the best job it can.
What’s the hardest thing to do with having eczema?
The hardest thing is not caring what people think and also realising that I never look as bad as I think I do. Even when my skin is pretty good, in my head I’m still that ugly girl with awful, disgusting skin. It’s still a work in progress, being kinder to myself. I would never speak to anyone the way I used to talk to myself about my skin. Particularly now, while it’s going through TSW, burning, crusting and flaking off on an almost daily basis it’s really hard to feel pretty. I know I am, and I have such an amazing support group around me but it’s difficult to feel confident when you are in pain, and even when you’re not, worrying when it will get bad again. I’m single at the moment and can’t even imagine anyone ever being interested in me again, this is despite the fact that in my limited experience with guys, my skin never bothered them so it’s a really destructive way to think. I’m working on it. I am a work in progress and one day I will get to a place of contentment with my skin.
What - if anything! - have you gained from having eczema or going through TSW?
Oh boy, so much. It sounds crazy to say I’m grateful for this experience, but it has literally torn me down to my lowest, almost destroyed me, only to slowly build me back up again. All my preconceptions about my skin and myself were flawed. Not only have I gained a new love for myself and an appreciation that I need a regular self care routine, but I am also now learning to put myself first. That’s a hard one as I’ve always taken it upon myself to concentrate on making sure everyone else is OK, often at the detriment of my own health. Being a people pleaser means I have to work hard at saying no, backing away when things are not my problem and I can’t help. I don’t have to help everyone, but I can do my bit, through my blog and sharing my TSW journey.
How is your relationship with your healthcare providers?
It’s OK. I do have a lovely dermatologist and dietician at the hospital I go to. They are really trying to help me, but my dermo does struggle with my decision to cut out topical steroids. He is, however, working with me, continuing to see me regularly and also helping by referring me to treatments I am happier to try. For example, I am just trying out UVB light therapy for the first time to see if that will help. I want to be managing my skin drug-free, and the NHS doesn’t work that way; all the recommended treatments are drugs and so far they’ve not worked for me.
What would you like to change about the way eczema is treated in the UK?
I want healthcare providers to start by looking at why, the causes, and not just offering a plaster to cover up the symptoms. That only works short-term if the causes are never established. I want them to look at diet: I know food triggers my skin to itch and is also linked to my allergies to dairy, nuts, wheat and soya. Lifestyle can also play a massive part from indoor pollutants, skincare, washing powders, pets, stress and how to manage anxiety and poor esteem caused by living with atopic skin conditions. So many doctors, nurses and well meaning people have told me to ‘just stop scratching’ but until very recently no one taught me how to do that. If you have eczema, you’ll know that it is often impossible to just stop! If you are living amongst triggers it’s a thankless task, but it’s taken me years to work out what lifestyle and environment changes affect me. Getting CBT for anxiety and panic attacks a few years ago was life changing for me. To realise you can’t look yourself in the mirror and say, “I love you” was really hard. Through those sessions I learnt about my own worth and so many techniques to practise to help me to slow down, reduce my heart rate, take a step back and give myself the time and space to heal, to care for myself properly and to now finally feel like I have the tools to keep on working towards a healthy body, skin and mind!
What are your top tips for managing a challenging skin condition?
I would tell anyone struggling with any skin condition that they are not alone and to get as much information as they can. Get researching, join the charities and support groups and follow bloggers. Social media has also been such a support to me, reaching out to other people in the same boat, all across the world and sharing tips, tricks, experiences and just being there for each other at our lowest. Also talk to people. Tell your friends and family how you feel, how your skin affects you and makes you feel and what they can do to help. If people comment on your skin, ask them not to and explain why. I don’t think people mean to offend but having comments is unkind and hurtful. We know we look crap and our skin is dry, we spend hours trying to make it better! It’s often better just not to comment.
What’s the one thing that you wish people who don’t have eczema knew about living with skin conditions?
This leads in very nicely from the last question. I would ask them to think about living in my shoes for one day. The sleepless nights, the fatigue, the skin flakes, the pain and waking in the night. The morning routine to get skin ready for the day. The courage it takes to go out when you feel ugly, disgusting and unworthy in a world where image, appearance and looking good seems to be so important. I would also ask them to stop and think before ever commenting on someone’s appearance. Don’t ask what’s wrong with their face, why they are so red and flaky, don’t ask what’s happened to them. Don’t offer advice without being asked for it and don’t moan about that tiny rash you have… Just be kind. If you want to help, just ask your friend with eczema if you can help and what you can do. Mostly we just want you to ignore our skin and be our friends with a little compassion for the extra stuff we go through before the day’s challenges even begin.
Thank you so much for your wise and thoughtful answers, Ruth!
Ruth Holroyd is the founder of What Allergy, an award-winning blog about all things allergy. Ruth is passionate about raising awareness of allergies, anaphylaxis, eczema, topical steroid withdrawal and asthma, all life limiting conditions. She lobbies parliament, speaks regularly at events and shows and is a judge for the FreeFrom Food and Skin Care Awards.