Living with Severe Eczema

I honestly wish there was another word for it. "Eczema" is so well-known. Almost everyone will experience eczema to some degree at least once in their lifetime. Because simply, eczema is irritation of the skin. Of course, there is so much more that goes into it, especially for those with severe cases. But it's not rare to be diagnosed with eczema. Most people you come across in your life will know what eczema is when you say you have it. Because I have such a severe form of it, which is not what the average person experiences, I wish there was a different name for what I go through.

I'm currently on the drug Dupixent, and I have been since August 2017. If you don't know, Dupixent is a biologic used to target eczema. It was just approved by the FDA in March of 2017. Its goal is to reduce the severity of inflammation and flare-ups in the skin. How it works is the patient must administer themselves an injection once every two weeks. It was working extremely well for about four months. Now my body is acting as if I am not even on the drug anymore. In other words, I'm just as broken out as I was before I was put on Dupixent.

I am 20 years old. The history of my eczema goes back to the start; my mom says I came out the womb with eczema covering my body. I live and have lived every single day of my life with an internally physical distraction: itchiness. I cannot remember a time in my life when I was 100% comfortable just sitting there.

The thing people don't know about people with severe eczema is the constant physical pain that we suffer from. It's so hard to explain, too. Because the pain is not comparable to a stab wound, and it's not comparable to a paper cut. It's not comparable to sore muscles or a broken bone. But I will try my best to try to explain the feeling. Imagine having eczema so badly on the skin around your mouth that you can't smile, you can't open your mouth wide enough to take a bite of food, you can't do these things without wincing from the pain. Imagine having eczema around your eyes and all over your eyelids, imagine feeling a sharp pinch each time you blink, due to the extremely dry and cracked skin. Imagine being unable to fully extend your arms and legs, because the eczema along the joints has tightened your fragile skin. With these limitations, I was unable to play sports growing up, just because of the physical stress my skin would endure.

Each and every day I wonder what it feels like to have smooth, flawless skin on my whole body. I wonder what it's like to not feel miserable all the time. I can't imagine how much more wonderful life would be if I didn't have to fight this every day.

This is why I wish there was another word for what I go through.