This article was originally published on Health.
What do you think when you imagine eczema? A red rash, dry skin? Or perhaps even an issue that mostly impacts kids? But what many people don’t realize is that eczema can be a painful, devastating condition. According to the National Eczema Association, 30 million people in the United States are currently living with some form of eczema. There are different types of eczema, so there’s no one-size-fits-all treatment plan. The most common type is atopic dermatitis, which can occur in people from allergy-prone families, and is related to an underlying immune reaction that affects the skin.
People with the condition can experience flare-ups at any time—sometimes for no reason at all—although eating the wrong foods, coming into contact with an irritating substance, or experiencing a bit too much stress can increase the likelihood. What’s more, the symptoms often go beyond red, dry, itchy skin; eczema can disturb your sleep, impact relationships, and wreak havoc on all parts of a person’s life. Chances are, you already know someone with eczema. Here’s what they want you to know about their day-to-day struggles.
Eczema is not “just a rash”
“I’ve been going through a particularly rough flare-up of my eczema for the past several months. I think the biggest misconception about the condition is that it’s ‘just a rash.’ I feel like people don’t take it seriously; even when I look up research on it, most is just targeted to children.”
—Kate, 24, Houston
The condition is more than just cosmetic
“In very bad cases or flare-ups, I can’t sleep and have no appetite… Physically, people don’t understand just how bad it can get. I shiver in the dead of summer because my weeping skin can’t hold my heat in. I can barely move my arms because every motion reopens a raw crack in the skin.”
—Dawn, 31, Los Angeles
Dry, itching skin can keep you up at night
“Eczema is the breakdown of the barriers that protect and seal your skin. Sufferers of allergies may know what the rash feels like, or someone who has brushed against poison ivy would understand the sensation of eczema. Also, since your skin barrier can’t really hold in moisture, dry, itchy skin is a constant battle. The discomfort of the itching and dry skin can lead to poor sleep, since you may, even subconsciously, scratch all night in bed.”
—Phil
Bad eczema has nothing to do with poor hygiene
“Before my diagnosis, I did not know how complex and varied eczema is as a disease. I also did not know how difficult it is treat, and how this difficulty stymies many doctors. Bad cases of eczema don’t simply arise from poor hygiene or skincare routine. It has more complicated causes, and hence, more complicated solutions.”
—Dawn
Since eczema is so hard to treat and individualized, suggestions do not help
“If you are a stranger trying to offer tips to someone with eczema… remember that I’ve spent a boatload of time, energy, and money trying to deal with my condition. I’ve read everything online, gone to numerous doctors, and tried all sorts of medical and DIY remedies. Trying to suggest that I try this one brand of lotion, or take a cold shower, can be infuriating. It actually trivializes what I’ve gone through.”
—Dawn
Eczema is an emotional burden
“This condition is chronic, and in addition to the external suffering, it can be taxing on your mental and physical stress levels. I’ve gotten many looks of concern, or heard comments from people I’ve attended school and worked with; this does drag on your esteem every day. I also wish people would stop insisting I see a doctor. If I am having a bad skin day, I know about it. I really don’t need the confirmation that my external appearance matches my internal agony.”
—Phil
Eczema is sometimes related to food allergies
“My eczema is closely related to my celiac disease and food allergies. For example, if I eat gluten and then get exposed to the sun, I will develop diarrhea, headaches, and a bad rash on my arms. When I was in my thirties, my allergy doctor diagnosed me with celiac disease and I also tested positive for many food allergies. If I avoid gluten and other foods that I’m allergic to, I get fewer rashes.”
—Janet, 67, Portage, MI
People with eczema are diligent about their self-care habits
“There are so many factors I’ve identified as my ‘triggers’ for my eczema, and I work hard to avoid them. Some of these include stress, food and seasonal allergies, too much alcohol on the weekends, dehydration, a poor diet of processed foods, and vitamin D deficiency.”
—Phil
The condition can really impact your social life and work
“This [recent] flare-up has caused a severe lack of sleep, frequent panic attacks, and a general spike in anxiety since my body is under this constant stress. The eczema has also affected my social life because I don’t really want to be seen when my skin is so torn up. If I didn’t work from home as a publicist who works remotely, I don’t know how I would have maintained a job.”
—Kate
Most people with severe eczema have tried it all
“I’ve tried it all: wrapping my skin in saran wrap, oatmeal baths, sleeping in leggings and long sleeves. I only use ‘all clear’ soaps, shampoos, and detergents. I even cut out gluten, just in case. I have seen several dermatologists, most of whom look at me for five seconds and say, ‘Oh, you have eczema,’ and then hand me some ointments, none of which have worked for me. I’ve been on several medications that either don’t show enough progress or seem to cause eczema flare-ups once you go off them.”
—Kate
Some treatments can may make eczema worse for sensitive individuals
“I have eczema on my hands and feet. Often, my flare-ups are related to what I consume or an allergic reaction to an ingredient. Mine tend to happen when I consume gluten products, especially rice and pasta. I’ve become vegetarian, which has reduced my outbreaks. Also, it’s important to be careful with topical solutions because they tend to have steroids or alcohol in them, and those can sometimes can make your eczema worse.”
—Querida, 34, Quantico, VA