Eczema is much more than a surface condition. It’s an iceberg disorder and the cure lives deep inside.

Itching, pain, burning, swollen, chaffed and irritated — Four days ago, I accidentally ate something I guess I’m allergic to. I don’t know what but I’m paying the price. This is the game I’ve played for 45 years — since birth — severe eczema has covered my body — flaring and calming, bleeding, irritated and painfully itchy. I’m used to it or I was until the last year. I’ve never had a time that it wasn’t there. Even during the calm times, there was still some inflamed part of my body. I can feel it when I put my clothes on and move around, I can feel it watching TV on the couch, I can feel it in bed before I fall asleep, I can feel the pain in my mouth when I eat, or talk or the pain of my bra strap, bra collar, waist band.

My normal eczema-ridden day usually starts unconsciously with a body scan to figure out how bad it is and then figure out what clothes I could wear, what textures, what could be covered and what needed to be uncovered. I normally changed clothes three or four times before I found the least uncomfortable outfit and then the second, I got home from work I would jump in the bath and change my clothes. Throughout the day I would run to the bathroom, slather on cream, and hold it together as the itch builds.

I felt it all the time. Until one day I didn’t. A year ago, I got sick — no one could figure it out, but my body started to shut down, I lost 70 pounds without trying, I developed tremors and all kind of weird symptoms, and I became suicidal. But weirdly the only positive during that time was my skin cleared up. Not just my skin, I no longer needed my inhaler, and my nose wasn’t runny. I was hiking through bushes, my neighbor’s dog touched me, the wildfires came in and I didn’t flare, I didn’t need a course of steroids, nothing happened.

It was the most amazing feeling in the world. I had always imagined what life would be like without eczema, but this was magical. Not only was the pain and itch gone but the baseline level of anxiety and stress that I had throughout the day was gone. The ever-ending questions of “can I touch that? Can I go there? Is that going to flare me? Is it going to get worse? Did I wash my hands? Did my kid wash his hands and change his clothes before he hugged me? All gone. I got to go on day trips with no changes of clothes, I went on a trip without access to a bathtub, I didn’t have to cancel meetings and time with friends because I looked like someone had thrown acid at my face. I didn’t have to plan for a flare or an attack, I just lived.

My suicidal ideations from my illness led me to a psychiatric hospital that taught me a bunch of skills — mindfulness, yoga, meditation. But it also helped me recognize the level of 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. It wasn’t until the moment that my eczema was gone that I realized how much my eczema, allergies and asthma had shaped my personality and my life. I struggle to relax, I struggle to just go with the flow and exist in the moment. I am constantly planning, going through the What ifs, and anticipating the next catastrophe. I am always moving and distracting and tackling something. I am worried and anxious all the time. But this year, my family noticed a difference — they noticed my ability to sit still and just breathe and sink into the moment in a way they had never seen before. I was the sickest I had ever been in my life but also able to reach a calm I never could with eczema.

And then one day, it all came back. As I’m sitting here writing 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.

But why? Why had it disappeared and why had it come back? During that time, I got diagnosed with severe gut infections — pseudomonas, staph, norovirus, Ecoli , to name a few. I was riddled with bacteria and viruses exponentially above any level the human body should have — but other than weight loss, lack of cravings and appetite, and nausea, I had no gastro symptoms. I had volatile levels of vitamins and minerals — that alternated between too high and too low. I had a tumor on my thyroid the size of a tennis ball that was growing exponentially and theoretically a spurting tumor that was producing too much and then too less hormone depending on the day.

Everything started to shift when my thyroid tumor came out and gut infections cleared Each doctor has a different theory to what happened. My neurologist said that you’re your thyroid controls every aspect of your body and can shut down metabolic pathways. As your body is struggling to cope, the first things it shuts down is executive brain function, it slows down the gut and digestion, it shuts off pain receptors. His theory was does it shut down the allergic response at a certain point. My endocrinologist said your thyroid hormone levels impact allergic response and if over or under can trigger asthma, eczema, and allergies. My gastroenterologist thinks there was some relation to the gut infections and leaky gut syndrome. My dermatologist thought I was suffering from sort of HPA dysfunction that was turning on and off-key functions in the body. I also remembered that something similar had happened when I was pregnant both times — my asthma disappeared completely overnight. I went from needing a nebulizer to barely needing my inhaler overnight.

My immunologist had the funniest take of all. He said, it doesn’t matter why it’s happening, just enjoy it. But it does matter because somewhere in my body is the cure. Before this happened, I had just accepted my life as is. I’d never known any different. But now I have. Now I’m like a person who was born blind, who was given the gift of sight for a year and then it disappeared. Now I am missing something. But I also know that the cure is out there and its not just about your body’s reactions to external allergens, its also the right combinations of hormones and the perfect microbiome in your gut.

So, in the meantime while I wait for a cure, that I know will be found, 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 to not just accept that your eczema isn’t just about allergen reduction and creams. There is the ability to heal in your body and the right combination of things can help reduce your symptoms — you just got to find it and activate it. I remain hopeful that I can find mine again one day. So much of eczema is about what you look like on the outside, but eczema is like an iceberg and the cure is on the inside. If you have the health insurance and can afford it, I advise you to 1) get your thyroid levels checked and make sure they are in balance, 2) get gut and stomach health tests performed, 3) have your hormone levels checked and work with other specialists beyond your dermatologist and allergist to get your body into optimum condition. These were things before this year I didn’t understand affected eczema.