"Eczema is a disease that no one can understand fully unless they have experienced it themselves. For 15 years of my life, I have battled this disease by myself. But I’m starting to realize I don’t have to endure this fight all alone."
Published On: Feb 26, 2021
Last Updated On: Nov 18, 2021
Eczema is so much more than a surface condition. It’s like an iceberg, with so much more hiding underneath. And the path to healing also lives deep inside.
I’m sharing my story in order to reveal something that took me years to realize: you have the ability to heal within you – you just have to find it.
Itching, pain, burning, swollen, chaffed and irritated: this is the game I’ve played for 45 years. As I write this, my eyes are swollen partially shut; I look sunburned; I have a cold pack on my neck; my nostrils and lips are cracked; and I’m bleeding through the back of my shirt. It sounds horrible, but when I was little, I used to wish I had a “real” disorder like leukemia, because people would understand it better. Everyone thought I was making a big deal over “a rash.” People would compare it to their sunburn, poison ivy or that itchy patch on their finger and I felt invalidated and dismissed.
This was something I carried with me well into adulthood. I wish I understood then that I wasn’t defined by my skin and that I was lovable, smart, creative and funny know matter what my skin looked like. And if people couldn’t see that, that was their problem not mine.
It’s one part of the iceberg. When I was younger, it wasn’t something talked about in general, let alone in relation to eczema. My own mental health journey hasn’t been easy. I wish now I had started therapy earlier, but instead I threw myself into distractions: work, college and community service. The more I did, the more I didn’t need to listen to my feelings – just keep moving, doing, achieving, don’t stop. Everyone has their own coping mechanisms – some healthy, some not. I didn’t even realize mine weren’t unhealthy until too late.
Eventually my body just couldn’t keep up. It was like an animated cartoon of a train stopping and all the coaches colliding together – 45 years of feelings hitting me at once. I used distraction and work no differently than a drug addict, to numb the emotional or physical feelings, either directly from eczema or the legacy of eczema.
And a little over a year ago, I got sick – really sick. No one could figure out what was happening to me, but my body started to shut down. I lost 70 pounds without trying to; I developed tremors and all kinds of weird symptoms, and eventually became suicidal.
My suicidal ideations from my illness led me to a psychiatric hospital that taught me a bunch of new coping skills – mindfulness, yoga, meditation. But it also helped me recognize the level of everyday stress and anxiety I was under from my eczema. Doctors and therapists pointed out that being allergic means that your body is always in a fight and flight state – anticipating, worrying, trying to control, defending.
That’s before any other stressors are added in. I wasn’t aware of the connection between my eczema and my anxiety disorder – that your skin is a key input to your nervous system and your brain is always on high alert from the extrasensory data from your skin, plus the extra thoughts needed. What can I eat? Can I touch that? Will that cause a reaction? All this can easily overactivate your nervous system and when you add in steroids, it’s even more.
With the right therapist, you feel heard, validated, accepted and seen. They can push back on your thoughts and feelings and it feels more like “aha” versus feeling like you’re on the defensive. When you leave the session, you may be sad, but you feel that you learned something, and you made progress.
One of the most helpful things to me was developing an emotion/reactivity scale. The range for mine goes from zen/mindfulness through good; dysregulated, distress to crisis. I check in with myself at least every hour and ask myself where am I? how am I doing? In the past I didn’t notice until I was in distress, and by then it was too late. I didn’t feel myself ramp up, or I never got myself back to baseline in between periods of stress.
Do you ever find yourself with your shirt or pant legs up, just scratching away, until you bleed and don’t remember how the itch even started? Catching it earlier before you get to that point is important and it’s the same with your mood. I have a list of go-to activities for each stage. I even have a cheat sheet and signs of each stage on my fridge for my family so that they can help.
Sometimes you just need something quick to stop your spiraling or break up the slide into a bad space. And sometimes, especially if you are dysregulated or distressed you need a prompt from those around you. It’s like a reboot.
Since Covid-19 started, I have done a lot of walking. My therapist gave me the trick to pick a color and to identify as many things on the walk as you can with that color and write them down at the end. The act of walking and that activity stops your brain from spiraling and enables you to be in the moment. Another one she taught me is something I call “5, 4, 3, 2, 1,” which activates all your senses: name five things you can see, four things you can hear, three things you can smell, et cetera. and then tell someone at the end of the walk.
There are so many different types of mindfulness and meditation and, like creams and medication, you must find the one that works for you. With eczema, I avoid body scan meditation – I need to ground myself in my environment vs my body, otherwise I start noticing my eczema and get itchy and get more anxious.
It took the Covid-19 pandemic and a severe illness to force me to stop and identify what a mental health baseline of calm actually looks like – stripping away all those distractions and old coping mechanisms.
These days, I’m working on anything I can do to help my body – whether that’s probiotics, good sleep, eating right for hormone and thyroid stability, mindfulness and meditation. But I am also reaching out to others so that they can learn from my journey and also start to understand that your eczema isn’t just about the surface allergen reduction and creams.
For too many years, dermatologists have told us to just put cream on as the answer to eczema, but now there is so much research and investigation into all the new aspects – healing your gut, healing your hormones, healing your mind, and healing your whole body. Your care team is more than your dermatologist now – it’s a therapist, an acupuncturist, an ob-gyn, an allergist, a gastroenterologist and so many more. It’s also important that you get a regular baseline set of bloodwork for vitamin/mineral levels, hormones, gut, immunology, thyroid – all of which can affect your eczema.
There is the possibility of healing for your body and emotional wellbeing: the right combination of things can help reduce your symptoms – you just have to figure out the right balance.
If you’re newly diagnosed, and new to this whole journey with eczema, let me just tell you: hang in there. You are not alone. You can do this.
Author Angeline Fowler is a NEA Ambassador. Learn more and join NEA Ambassadors.