Guest Blog from Ruth Holroyd - Living with TSW
Guest Blog from Ruth Holroyd and author of Anaphylaxis: The Essential Guide: An Action Plan For Living With Life-Threatening Allergies and The Shape of Skin – poetry for people with eczema, sensitive skin and topical steroid withdrawal.
Living with TSW is really tough. It’s a rollercoaster with no kind of sensible linear healing trajectory. For instance, my most recent flare was worse than some of the first awful days. You kind of expect to start to improve, to have lessening symptoms as you heal but with TSW you can indeed feel like you’re getting somewhere only to be plunged back into the most awful pain, oozing, open wounds, sleepless nights and back to square one. But I have to see each cycle as a kind of healing crisis and every time is one step closer to skin freedom and healed skin. I may always have eczema but I can handle that. And I cannot wait to get to know my skin as it should be and understand better what things may help me live with it better.
People ask me why I’m putting myself through this, if I could have normal manageable skin using steroids and immunosuppressants. What made me quite the steroids? It’s long story of a slow dawning, that what had once been just eczema, was now turning into an all over body situation that was far worse than it ever was. I realised that if I went even a week without the topical steroids my skin was completely broken. This felt wrong. How could my skin have become so reliant? So broken and damaged that it was impossible to live without these medications. I was unhappy using them and scared of the long term damage. I realised I was addicted and was seeing my future using stronger and stronger medication, all focusing on dampening an immune response, ignoring what might really be going on. It was as if once I’d realised I was addicted, I begun to discover so many others were going through the same thing. And the only real solution was to cut out topical steroids and go into withdrawal. So now, here we are, 2 years and ten months into my journey and still healing. I think it could take me 4-5 years due to the length of use of the steroid creams. I’m 48 now and think I begun using at the age of 4 years old, so a lot of healing needs to take place. I hope I can heal sooner though and am doing everything I can to heal my gut, my old trauma and beliefs and my lifestyle so that when withdrawal is over my skin has the best chance for enjoying the rest of its life.
Which symptoms are most prominent in your skin?
I have most of the symptoms, a cycling through horrendous itching, inflammation, swelling, oozing and then crusting and excessive flaking. I also got zingers which is another word we give to nerve pain – like stabbing pains coming from deep inside which are very painful and prevent sleep. Insomnia is also my other worst symptom and I’m always so tired. My face, hands, wrists and arms are my worst affected areas with my face being worst of all.
Did you seek to get a diagnosis? Was that difficult?
I have sought a diagnosis but my dermatologist insists that topical steroids and topical and oral immune suppressants are perfectly safe. He continues to see me to observe my progress but ultimately as I’m refusing treatment I should be discharged. He has put on my notes that I’ve stopped using topical steroids but not that I have TSW. I don’t he really believes it’s a real condition. I hope one day that I can go back and show him that I was right and healed myself.
I think most GPs and dermatologists refuse to accept it at the moment. If they do, what is their option? The current NHS does not have the infrastructure nor the resources to support people through TSW. There are other new drugs coming along but all suppress the immune system. No one is looking at causes and triggers. I feel we need a more holistic approach and that it is a long way off. Despite the MHRA sharing guidance on only using topical steroids for 1-2 weeks, things are not changing. I hear every day from people being prescribed topical steroids with no guidance about addiction, over use and the potential for this horrendous addiction and withdrawal.
How does this impact your everyday life? Has this caused you to feel self-conscious?
The effect has been massive. From the moment I get up, to the moment I go to bed, my life is dictated somewhat by my skin and also causes a lack of sleep due to terrible insomnia. I try to live my life to the fullest but it’s hard, when you are in pain, flaking excessively all over your face and just so exhausted and self-conscious. Working is really hard because of the time it takes me, getting distracted, over heating and cooling down, losing focus, getting itchy and irritable. Making healthy food from scratch. It is exhausting and then we can’t sleep. I’m so lucky to be working freelance from home, so that I can plan my days and grab sleep when I can. For instance, I often get a chunk of good sleep between 5-6am and 9-10am. So don’t call me or expect any sense before 11am in the morning!
Do people ever make comments or give unwanted advice?
People comment so much about my appearance that it can be shameful and make me feel very aware of my appearance. I know most people feel sympathy and want to help, or offer advice but it’s really not welcome. Often I’ve worked really hard to get out, get ready, pushed down that anxiety and made it somewhere and so many people ask what’s wrong. It’s impossible to forget about your condition, impossible to feel normal and just serves to draw attention to something painful that you want to forget just for a minute.
My advice to anyone looking at someone with any facial difference, bad skin, whatever it is, is to just stop for a second. Are you curious? Is this question for your own self-gratification and curiosity? That you want to understand or try to help? Please don’t. We have tried everything and don’t want your advice or your sympathy. Engage the empathy instead and just be kind. Talk to us about anything else except our skin.
Did you ever encounter a lack of understanding or support from your friends and family?
Mostly people around me are really understanding but it’s very hard for them to see us suffering and not to know what on earth they can do to help. I’ve been really lucky to have incredibly kind and supportive family and friends. However I get the most support from people on Instagram – not even joking. It’s such a supportive community.
Have you tried any unorthodox or unusual treatments, as an apparent last resort or out of frustration?
I’ve tried loads of things from drinking aloe vera to expensive cure all creams. I’ve generally steered clear of the unorthodox and unusual although going TSW is anything but normal. I’ve spent a fortune on stuff that hasn’t worked. It’s heart breaking.
Could you describe your healing journey to us?
It’s been up and down and a bit of a rollercoaster. My eczema has ebbed and flowed over the years. Bad in childhood, cleared up a bit then returned at university. Cleared up a bit then returned again. And eventually now I’m on TSW when I realised in my 40s that something wasn’t right. I am amazed now that I have quite a good quality of life during TSW (apart from when flaring badly when I am housebound). It’s been hard because it’s not linear or in any way a sensible healing journey. You can feel an area has healed only to see it deteriorate worse than before in an endless up and down back and forth dance.
But TSW has taught me so much. It has taught me self love and self care – radical self care! It has taught me resilience and acceptance. I really have learnt so much and healed lots of past traumas that I hadn’t realised were not quite resolved. It has brought me to my knees and shown me how much more brilliant my life will be when I am healed and living in a place of such gratitude. I really strongly know that I will heal. I think it is possible and I’m looking forward to getting to know my skin when it’s free from withdrawal. I may always have a tendency to eczema skin but I know I can manage it naturally.
You seem to have a very positive mindset with regards to your skin, how did you get there?
It wasn’t easy. I was having some therapy about something else and realised that I didn’t like myself, couldn’t say ‘I love you’ to myself and so much of that was wrapped up in shame and guilt about my skin. It made me realise I had to do so much work to learn to love myself. And loving your skin, when it’s falling apart is not easy. I have learnt so much over these past few years about what I need to be happy and healing. Discovering self love and self care taught me to be kind to myself and have empathy for myself and not just for others.
I’ve stopped being so hard on myself. If all I do is get through the day, that’s a win. I am right where I need to be, and if I damage my skin, that’s OK too, because it will heal. Nothing stays the same forever, it passes and I really believe I will get through TSW and get to experience my skin as it should be one day soon.
Are there things that help you from the inside out? e.g. certain food or avoiding certain foods.
This is such a tricky question because each one of us is totally different. What works for me might not work for others. But I do believe we owe it to ourselves, our bodies and our skin to explore whether we do have any external triggers from contact allergens, foods, stress, lifestyle changes. For me food can be a trigger and I’m trying to eat foods that don’t vasodilate and also to avoid inflammatory foods. If you look into it there are lots of foods that could be good and many that could be bad so do your research – you own it to your skin!
I swear my dead sea salt baths really help, as does trying to exercise as much as I can. I do take lots of supplements to help with inflammation and to heal my skin, I’m throwing everything at this so my skin can come out of this fighting, healthy and new.
What advice would you give to others about living with TSW and the mental ramifications of having it?
I would say talk about it. Tell your friends and family. Educate them and others. Share your story if you can, but if not, then report it through the Yellow Card Scheme. Be aware of the mental health side and also look for signs that you might need help ie infections, anxiety, depression. Don’t be afraid of doctors – they may have failed our skin but they may be able to help with practical things like sleeping pills, antidepressants, antibiotics for infections etc.
Also get some counselling. I can’t tell you how much it’s helped me. Remain vigilant and aware of your mental state and be kind to yourself. Please don’t suffer in silence. This condition can be awfully hard to live with and very depressing. Don’t be ashamed of finding this hard.
What has most helped you (e.g family support, groups, research, food?)?
There is a large and supportive community online, in particular on Instagram which I’ve found invaluable for helping me. Complete strangers on Instagram have literally kept me going and I feel closer to some of them than I do my friends and family because they really get it and are travelling the road with me, living in my shoes and feeling my pain.
I think letting go, accepting this is happening and going with it has been the most important lesson. Because sometimes, even when I’ve been eating all the right foods, not drinking alcohol, getting to bed early, taking all the supplements, obsessing about being mindful, trying so so hard to heal – it seems like nothing helps. You can flare in the middle of any situation regardless of what you’re doing to try to heal. So I almost think you will heal anyway, but my nature is to try to make a difference and improve my body’s chances of success so I will keep on trying things But ultimately, not to stress to much about any of that. Not to compare your journey to other people. Not to obsess over your skin’s progress. Easier said than done.
If you can accept what you cannot change and just observe the process with kindness for yourself, it will be an easier time. The rage and anger will be natural at first but you have to try to focus that into passion and positivity or your skin may suffer from the heightened anxiety and tension that anger can bring.
I’m still healing and will reach the 3 year mark in January 2022 so I have no idea what else I have to learn. Or where my journey will take me. But I will end by saying, therapy and learning to accept things and love myself and my skin was a game changer and for me that produced poetry. I really find writing and journaling helped me. It might not help everyone, but if that’s your thing, check out my poetry book, The Shape of Skin, poetry for eczema skin. It was a kind of therapy writing it and I hope it can help others feel understood, heard and comforted.