My skin has always felt like it is on fire.
Your skin holds you together, acting as a barrier of protection between your body and the outside world. Our skin is supposed to keep us safe.
As a newborn, I was diagnosed with eczema. Many people know eczema as red patches and dry skin on little kids; doctors characterize it as itchy rashes and inflammation. Mine has always been a lot more than that.
In elementary school, I would scratch until I bled so often that my teachers would put tissues on my desk so I didn’t have to keep getting up.
In middle school, rashes moved to my face and took over my body. I woke up most days swollen and unable to open my eyes.
During the COVID-19 lockdown, my skin crusted over my joints and face until I could barely move my arms or open my mouth. I limited the pain by avoiding eating or leaving my room.
In high school, I jumped between medications and kept ice packs in my teachers’ freezers. I missed school because of flare-ups, side effects and doctor’s appointments.
I learned to cope with a rebellious body.
They say, “Be comfortable in your own skin.” The saying is supposed to be a metaphorical lesson in authenticity. Your skin is raw, uniquely you, the most visible part of your body.
The standard for skin is to be smooth, clear and untouched. Bloody swollen rashes don’t fit that standard. How do you stay comfortable with yourself when the world doesn’t think you fit? I don’t post many pictures of my skin in a flare-up. It’s who I am, but not fun to look at.
Skin is your largest organ, and I would venture to say that it is the most harshly judged.
Dermatologists referred me higher and higher up until I saw “the one who wrote the textbook,” who immediately brought more people in to run tests and figure out my unmanageable skin.
I was 17 when I was diagnosed with allergies to propylene glycol and fragrance. The doctor who told me said, “I feel like I am handing you a death sentence” because the chemicals I am allergic to are impossible to completely avoid.
I was just glad to have some answers: my rashes and swelling are caused by both an internal immune response and external allergens.
But living with a chronic disease is exhausting.
Pain and itch are a constant overwhelming form of sensory input, treatment is a part-time job and it feels like I never stop explaining why I look the way I do.
How do you hold yourself together when your skin can’t?
I still don’t have all my answers, and every day is a little different. Most days my face is swollen and my arms are red and bleeding. I have rashes on my neck that middle school boys used to think were hickeys.
I am held together with broken skin, but that’s okay.
Only you know what it’s like to live in your skin, so embrace what you can and give yourself some grace.
