WARNING: There are some things that I describe that may be a bit graphic for some people!
I started writing this a couple of weeks ago at 1 a.m. because I came across this video by @hahnbyolchang on TikTok where he showed his face and the pain he was going through because of severe atopic dermatitis, also known as eczema.
I had everything on me that he does in that video. Frankly, I felt ugly, gross and just like someone that nobody wanted to be around. That is what I thought and felt for almost my whole life to date. It’s hard to describe severe atopic dermatitis to somebody who hasn’t experienced a whole-body rash that comes and goes for years leaving behind scars and skin pigmentation.
It’s hard to explain to someone that you felt like if you took a step or picked something up then your skin would crack, bleed or ooze. It’s hard to explain to someone that you had a smell, a constant smell that reminds you that you’re sick and you can’t control it because you’ve already been through hundreds of meds, too many doctors to remember, too many sleepless nights and itchy nights.
The diets, oh the diets I was put on. They didn’t work but wow, did they ever mess with my body, the sugar-free diet and the gluten-free diet were among the many. Imagine only being in elementary school and you’re being put on a different diet every month because the doctors couldn’t figure out what was wrong with you. When I was in the hospital, it was the “worst they’ve seen”. I had to learn from a really young age how to listen to my body because certain foods made me itchier than others. I remember being put on a steroid called prednisone that increased appetite but a side effect was my stomach grew, not from weight gain, but from the drug. I went through this in grade 2 and 4.
Oh and I definitely can’t forget the natural, holistic and Chinese medicine. Nope. The special “tea” I had to drink everyday. Nope. I think I almost threw it up every time I drank it because it tasted like bitter, not yummy soup and smelled like a garbage can. But one of THE hardest things was going to school, seeing my friends and ALWAYS having some sort of rash or peeling skin on my face, neck, hands, legs… you name a body part and I can tell you 100% that my skin has peeled there or I itched myself there so much that it bled.
At some points, I was embarrassed and didn’t want to leave my house because I was so uncomfortable in my skin. I cried. A lot. Sometimes I cried because I needed someone to itch my back or because I was forced to wear gloves with elastic bands around my wrists so I couldn’t scratch myself in my sleep or take off the gloves in my sleep. I also bathed in diluted bleach a few times. It didn’t end up doing anything to help me but I cried. It stung. Everything stung.
One of my many hospital photos with my brothers at my side. It took a lot for me to be able to share this but I decided it was the best one because it shows everything in one shot.
I got sent to the hospital a few times because the doctors couldn’t do anything else, the dermatologists couldn’t think of anything else to do. It got so bad that I got a blood infection and was sent to the hospital yet again. All because we didn’t know why my skin was constantly flaring up and what was triggering it.
Everyday was a skip day
I always hated missing school when I was younger. I always wanted to go but it was too dangerous because I had no protection or barrier on my skin. I was raw. I bet some of you reading this remember what I looked like 10 years ago.
I remember I came back to school after being in the hospital and missing a month and one of my friends at the time said: “I thought you were dead.” I don’t know if it was a joke but yeah, that was elementary school.
I missed the last month of school in grade 4 and the end of the year trip was African Lion Safari. I was so disappointed but my mom thought I’d make it so she got a “big kid” stroller hoping she could push me around but the doctors said nope. It’s too dangerous. That was also the first and only time I missed a dance recital and I was devastated. All 13 years of my dance career, I didn’t miss one recital except for that one.
I missed a lot of things when I battled my eczema. You could probably imagine the number of events I was left out of or couldn’t go to because I physically couldn’t get out of the house to do it. I lived in our family room on the couch at my old house for about a month before I went to the hospital (again). I slept there and ate all my meals there, even brushed my teeth there. I really only got up to go to the bathroom, it just hurt too much to do anything.
I didn’t feel comfortable in my own skin until the middle of high school when I was finally growing out of the scars and white skin pigments that were left behind from rashes. To this day I am beyond grateful for the family and friends who visited me in the hospital and at my home. They saw past the flaky skin, some I am still friends with to this day and those visits were the only thing that kept me going.
Post-recovery I was invited on CHCH to talk about the amazing work that the Ronald McDonald house does for hospitals. It was also my first news debut ha!
The end of it
After years of tests and allergy tests like the patch ones they put on your back and make you leave it on for three days (gross), they finally found out I was allergic to many things: cobalt dichloride, cocamidpropyl betaine, methyl methacrylate, nickel sulfate, paraphenylenediamine and propylene glycol. I won’t lie, I don’t know what half those things are but I know the biggest culprit is nickel. Yes, nickel like the metal.
To this day, I don’t think it was any of these allergies that caused the hospitalizations and peeling skin. I think it was something in me, I was almost allergic to myself but eventually, after this, I slowly started to heal and stopped seeing 500 doctors at once. I have a thick package of paper on my shelf that contains a giant list of foods and things I can’t eat because they have high nickel content, whatever that means. But yeah, finding that allergy only took like 10 years and a lot of suffering.
My parents, brothers late uncle and late grandmother were and still are my biggest supporters so seeing them in tears always when I was suffering made me hurt more but it made me fight harder. I still have scars from it but I cherish them because I know how much I went through to be able to not scratch myself in my sleep until I bleed so I can now get out of bed in the mornings without blood on the sheets. It was because of my family and friends, that I haven’t stayed overnight in a hospital in years and I haven’t had a flare up in years. There are a few places on my body where I’ll get a rash once in a while like behind my knees, my arms, eyelids and hands but I own it and now have the right prescriptions for it after years of trial and error.