This applies to anyone going through topical steroid withdrawal really as skin flares can signify issues, triggers, allergies or stress that needs to be addressed. But if you’re going through TSW the flares are probably often just skin your healing.
It can feel like a constant attack, like it’s never ending and the flares just keep coming. That’s because they do, when you’re healing. And it’s a great sign, the healing cycles go from inflammation and itching to excessive flaking when your skin is healing.
Is it a skin flare and what’s causing it?
I hear people often saying, “My skin is flaring again.” or questioning what has caused their latest flare.
With TSW it’s often so random and isn’t caused or triggered by anything. Although of course it can be if you have allergies and sensitivities that you’ve not uncovered or which have just begun during withdrawal. Therein lies the complex and frustrating relationship with skin when it’s inflamed and healing.
For me, during my TSW journey my skin has ‘flared’ almost every week and often every day in some shape of form, from more severe to much milder inflammation and flaking.
What is the TSW healing cycle like?
I think this may vary between people, but mine go like this:
- Inflammation, redness, swollen skin that is very itchy. In worst cases can also ooze or be damp.
- Extreme pain, deep grooves that have nerve pain, insomnia.
- Crusting and excessive flaking. This can be anything from thick crunchy flakes to smaller finer flakes in a milder healing crisis.
And this cycle has repeated on an endless, exhausting loop throughout my TSW healing journey so far. Sometimes it can go from inflammation and itching to the shedding flake off phase in the same day! It’s incredible how the skin can proliferate like that so fast.
It’s been pretty intense since October 2021 but I feel like as Spring and Summer approach the warmer weather seems to signal some relief in my healing
Believing you’re healing
Having a positive mindset has really helped me through my topical steroid withdrawal journey. At first I kept setting fake deadlines in my heard, targets by which I expected to heal by. Then when that didn’t happen I would begin to doubt. I would lose hope and start to feel negative, like I’m doing something wrong or not doing enough to aid my skin healing.
Now I am learning to use different language. When I talk to myself now I say things like:
- I will heal when my body is ready
- I have everything within me to heal and I am healing every day
- My skin knows how to heal itself
You have to accept what is happening, let go and dive in. Just go with the flow, the ups and downs and the healing crises (formerly known as skin flare ups) and learn to sit with the discomfort.
This is something that was really brought home to me during recent hypnotherapy and regression therapy. The meditations that were provided for me by my hypnotherapist focuses on these mantras, that we are worthy of healing and will heal.
What if I don’t heal?
What if my skin doesn’t heal from topical steroid withdrawal? Would I be OK with that? If you can learn to love yourself and find happiness even through pain and inflammation you are also healing deeper traumas.
Many people live with permanent skin differences, scars and conditions that can never be changed or healed. They are worthy of love, empathy and kindness. Learning to show that same love for yourself, your skin and your own body as it goes through this traumatic transformation is humbling.
There is a whole movement online of the skin positivity community. People with conditions like Treacher Collins that affects how the face is formed, those with acne, psoriasis, burns survivors and many more. In a world where we are often instantly judged by our outward facial appearance it can be hard to accept things if you’re not happy with them.
Check out this blog, “Let’s stop eczema bullying.” to find out how Jono Lancaster stays positive despite his facial differences
I’m learning to be at peace with my skin as it is today. My quality of life is pretty good; I can run, walk regularly, love yoga, have amazing friends and family who I enjoy spending time with. I am still working, part time with flexible hours, writing and blogging. I have so very much to be grateful for and practise regular gratitude journaling and guided mindful meditations. I find this brings me back to the present, helps me see how lucky I am and shows me how much I have.
Behaving as if you’re healed
.Another thing that is helping me is to kind of pretend I’m feeling better than I am and start planning for stuff, even on a day when I’m in pain and want to hide away. By doing this I’ve begun to embrace life more and get back out into the community again. I started booking meals out, accepting invitations, going to parties and nothing bad happened. Occasionally I was very uncomfortable, itched ferociously and was desperate to get home. But more often I was OK, and more than that, I loved being back out there.
It’s also OK to cancel if you are really struggling. Learning what your boundaries are and when you need to really rest is part of the process. Your friends and family will understand.
Don’t put your life on hold
There is a tendency to stop doing what is painful and isolate, Covid has cemented that as normal for us. Putting life on hold until we are truly healed. But what will healed look like? For instance I’ve put off dating because of my appearance, when actually if I met the right person that shouldn’t matter at all. I’ve put off buying new clothes and bedding because I just keep messing them up with the emollients I’m wearing that stain things, blood stains, and rips from scratching through the fabric. Something I’m going to start doing is to push these things.
Knowing when to push and when to rest
This month I’m having a massive declutter of all the messed up clothing and plan to buy some new items – carefully chosen – to be part of a new smaller capsule wardrobe. I have so much, stuff I never wear.
As for the bedding – that’s expensive so I’ll scuzz up these ones with the zinc cream for a while longer.
The dating can wait though. I’m happy with my decision to focus on myself at the moment. I have so much going on that I have very little time and room in my life for someone else. Time will tell though, maybe I’ll meet someone normally but for now, I’m happy with concentrating on healing.
It’s also OK to know when to say no, when to rest and take time to be on your own and do the things you love. Finding the right balance can be hard to do but in time it gets easier.
How’s your skin healing journey going? Are you struggling to stay positive? What do you do that helps you?