Psoriasis is a disease that causes cells to rapidly build up on the surface of one’s skin, leading to the formation of thick, silvery scales and itchy, dry, painful red patches that can colonize a sufferer’s entire body — from scalp to elbows, knees, and genitals. While there are a range of treatments that can help clear breakouts or manage the maddening itch, it’s rare, if ever, that a sufferer goes into complete remission. According to a National Psoriasis Foundation report, the condition casts a shadow over the everyday lives of about 20 percent of women (compared to 12 percent of men), and nearly 60 percent of female sufferers say it interferes with their quality of life.
Science of Us spoke with a 42-year-old resident of Beaverton, Oregon, who suffers from a particularly severe strain of the disease.
When did you first notice that you had psoriasis?
It started in my mid-30s. My elbows suddenly became really rough, itchy, and scaly. I had no idea what it was, so I was just applying lotion all the time and scrubbing the skin off, but it would just grow back thicker and thicker. I didn’t want to go to the doctor for rough elbows, but it was so itchy. I think I went online and saw images and it looked like psoriasis. I had never heard of it. But a dermatologist confirmed my own diagnosis. He told me to take methotrexate pills and it would clear it right up.
But there’s no cure, right?
No, not yet. And my doctor was an 80-year-old, out-of-touch dude in Marshalltown, Iowa. It got so much worse, covering my legs, arms, and trunk in a matter of months. Nobody actually told me that there’s no cure, so I was desperate. I tried lotions, gels, pills, you name it. When I learned that there’s no way to get rid of it forever, I was devastated. I remember thinking, You have got to be kidding. I just have to live with this? Being in a small town with a lame dermatologist, I didn’t learn about new studies or treatments or attempts to find a cure. The drug I was given just made it worse.
What exactly does it look like?
It’s chalky, white, blistery lumps of scaly, rough, chunky skin. You can scrub off the dry, white skin, but underneath it’s raw and pink. Then the scales just build up again.
How much of your body does it cover?
Eighty percent. I even have it on my head, my face, my back, my arms, and my butt.
Do you have it on your breasts or vagina?
No, luckily. They say that you don’t normally get it on your genitals or your face, but there are people who do and it’s horrible for them.
So, did you continue to try search for a cure?
I moved from Iowa to Oregon to see a specialist who does research studies, desperately hoping there was something they could do to get it under control because it I couldn’t function. The expert I saw said he couldn’t treat me from afar because you have to see him twice a week for a year. But he had so many options, and they were free. Luckily my sister and mother live in Oregon, so they said, “Let’s just move you out here.” I tried three different trials for six or seven months, and it was just horrible. The final one caused a horrendous breakout, and my hands and feet were covered in blisters. They were like monster hands. I couldn’t recognize them. Now I try to stay away from the medication because there are people who are getting cancer and I don’t want to risk death from trying to keep my skin nice. I quit trying.
What was happening in your life when it first appeared?
I was working every day in a diner that I owned and going through a divorce. I had two little babies, a grown-up daughter, and a husband who was another baby. I suppose it’s possible that the stress of the business and the relationship breakup triggered it, but who knows? However, before all that, I was in a 12-year abusive relationship. One morning I just took my daughter and dogs and got in a car and left, right in the middle of a snowstorm.
Was it physical or emotional abuse?
Terrible physical abuse. I was 17 when I met him. I tried leaving at one point, and he came and got me at gunpoint and told me to get my stuff and come home or he would shoot my family. Eventually I met a woman who had been through the same thing and she told me I just had to disappear. I had to quit my job and start over again. I went from that nightmare situation into another bad relationship. We had two wonderful boys but he wouldn’t do the things he needed to keep the family together. I’d lived my whole life trying to protect myself and I wasn’t going to let that go down the tubes, so I gave him 30 days’ notice to get out of my life, and that’s when the psoriasis started.
Have you worked since then?
Just some odd-jobs where I’m not messing with people’s food or touching their skin. I worked at a gas station a while back, and that was tough. When my arms were breaking out, you had to wear short sleeves, and people just stare and nobody wants to touch you. I just placed the money on the counter so they didn’t have to deal with my horrible hands. I have a degree from Drake University and I’d planned to go to law school and be a public defender, but my first partner wouldn’t let me. I always thought I’d do that once the kids were older.
How do you support yourself?
I applied for disability and the judge said that if I were to lose weight I would be fine. He said that my inactivity was nothing to do with my psoriasis. Which is crazy because it impacts your joints, and sometimes I can hardly walk on my cracked feet. Because of my inability to be around chemicals, I can’t really work with my hands. Also, I never know how I’ll feel day-to-day, so I couldn’t be a consistent employee. So I’m on assistance and I live with my mom, she takes care of the finances I can’t take care of. My younger sister helps out a lot. She paid for my kids to get braces so they have nice smiles.
Tell me about the itch. I’ve heard it’s maddening?
It starts like a mosquito bite, and then it spreads and you dig away at it. But you can’t scratch it enough. Nothing works. I’ve tried pickle juice, cooking spray, hemorrhoid wipes, vinegar, everything. The itch makes you insane. The worst part is getting itches you can’t reach, and you are wrestling around in your chair trying to get some relief. I’m not sure why, but it’s terrible at night. Maybe because you are laying still and focusing on it? The pus-filled blisters almost feel like you have a piece of glass stuck in your skin. You can’t scratch it because it hurts, but you need to scratch it because it itches. It’s a painful, burning itch that just doesn’t stop.
What’s the most drastic “anti-itch” home remedy that you’ve tried?
Lighter fluid and paint thinner on my feet.
And when you itch, does the skin flake off?
Whenever you go out in public, you don’t dare scratch. The chunks of skin get everywhere. I could never get away with a murder because the dandruff would give me away.
I imagine you’re self conscious about showing your body, so how do you dress?
If it’s an event where people don’t know me I keep covered up. Otherwise loose shorts and T-shirts. No elastic or anything against your skin. Baggy pants, all year round. Sleeves rub and make you so itchy.
Can you wear a bra?
No bras. No pantyhose. No high heels. I used to love to dress up in a short skirt and wear a pair of fancy shoes, but I can’t do that anymore. Makeup makes my face break out. Hair products are rough on my scalp. Chemicals and perfumes are impossible.
How’d you feel about your body when you were younger?
I thought I was hot! I was skinny with long legs. I liked to dress up and do my hair and makeup and wear cute clothes. I had a shoe fetish. But now it’s at a point where I don’t care how I look as long as I’m comfortable.
Can you shave your legs?
No way, that’s a huge mess. So I just burn it off! If you use a razor, you pull all your skin off and bleed like crazy. If you use hair-removal cream, it irritates your skin and stings. So I just use a lighter to singe it. In general there’s not much feeling because you’re covered in so much extra skin, so you have no sensation. I can’t even feel nice fabric. I want to put on a pair of luxurious socks or a really nice pair of fuzzy pajamas or wrap myself in a soft towel. But I can’t even feel those things. That’s very sad.
I imagine it causes a lot of mess?
I vacuum the living room almost every day because you get skin everywhere. I never wear white because I’ll scratch myself without realizing and get covered in blood. I wear black clothes so I can see it and just dust it off. If I’m in a friend’s car and it has dark upholstery you don’t dare scratch yourself. My friend has a black sofa, and when I go visit, I wait until she leaves the room and then I go and dust off all the skin because I know it’s there.
Do you have it in your ears or nose?
Yes, and I get infections quite a bit because of it. Once I couldn’t hear anything and the doctor said it was because I had a huge chunk of psoriasis on my eardrum. It gets up your nose.
Do you worry about it spreading?
When my hands or my face start to feel hot, I get really worried that I’m about to have a massive flare-up. The last time that happened, I had green pus-pockets completely covering my hands. I worry about that happening on my face.
Is there anything that soothes it?
The best relief is nice cold ocean water. I live about an hour away from the beach and I try and get to the sea at least once a week during summer.
Does tap water help at all?
No. It burns. It messes my skin up and it cracks and peels, so it’s painful. If you take a shower or a bath it loosens the crusty buildup, but what’s underneath is very red, raw, and irritated. I shower very quickly and then pat dry. And it’s a real mess — blood gets everywhere. It hurts to get clean. So I don’t have the luxury of a long, hot shower or bath after a stressful day.
So what’s dating like?
I don’t really do it. It’s too difficult. A lot of people who have this condition comment that they wish there were a dating site for “people like us,” but I find it hard enough to take care of myself — why would I get in a relationship with someone who’s the same? That’s a lot of work to take care of two people like me. It’s not sensible. Also, I just wouldn’t want anybody to see me like this.
Have you had sex since you got it?
I have, and it didn’t bother him but it really bothered me. We’re still friends with occasional benefits, but it’s just so awkward for me. I don’t think I would ever be comfortable in a relationship where somebody regularly sees what your body looks like with all this junk.
Does it hurt to be touched?
Yes. Cuddling is painful. Snuggling in bed with someone is very uncomfortable. Once you get into a good position, the last thing you want is somebody’s hot body against you because it makes you itch. Or if they bump up against you, it can crack your skin. It hurts to be touched, and nobody wants to touch you, anyway. You lose all that human contact. There’s no more hugging and feeling good. Even watching a movie and playing footsie, that’s not fun anymore. So you are really isolated.
Is there any comfort or intimacy that you can get? Can you tolerate any human touch?
There’s just no touching. It’s gone.
Would you ever stand naked in front of a full-length mirror?
No. I don’t like to see it. It makes me feel sad and sick to my stomach. I try so hard not to look at it, but it’s on my face, and that really bothers me. And makeup just makes it worse. I wish I could just cover it up and look nice for one night, but it’s just so yucky, it never really feels like there’s any point. I’m happier if I go all day without seeing my arms or legs. When I see them, I’m just overcome with sadness. I’m sure it must be like when women get their breasts removed: It’s like it’s not your body anymore. And then you forget what you looked like before. It’s very upsetting. There have been times when I’ve considered severely burning my legs just to get rid of it or having my skin removed, anything.
Have you had any terrible incidents where someone has made you feel like a freak?
I used to work in a gas station, and the son of a woman I worked with got it, and she accused me of giving it to him. I explained that it’s not contagious, but she wouldn’t believe me. I was furious. She even told the customers, and she was constantly spraying the counters down, cleaning every surface. Little kids will always say, “You have an owie!” Their parents are horrified. I was in Walmart once and a lady physically grabbed her child to move him away from me. I think she was worried he’d accidentally touch me.
How do you feel about having your photo taken?
I don’t like it unless I have time to fix my cheeks. I’ll spit on my finger and rub it and the dry skin will go away for a second.
What do you do to relax or take your mind off it?
I make seascape things and sell them at craft markets. I find things on the beach and put them on driftwood and place that inside a glass bowl.
Do you have a very serious moisturizing regimen?
Yes, I have to lather up constantly. If you let it dry, it just cracks and it hurts. Right after the shower, I lotion up head to toe, a nice, thick layer. Right now I have new spots starting under my eye. It’s really threatening to take over my face. I’ll put anything on it to stop that chalky look, that scaly face.
How much moisturizer do you go through a week?
I can go through a Noxzema-size container in two days.
When you do cover it with makeup, do you worry about and it monitor it all the time?
Yes. You have to keep a mirror and keep checking to make sure that it’s not coming through. Especially if you have a chunk of skin hanging off your face. Nobody is ever kind enough to tell you.
Is there a moment of recognition when you can tell someone is staring?
They won’t look in your eyes when they are talking to you. They look elsewhere, never in your eyes.
How do you feel when you look back at photos from when you were younger?
I really wish had taken more photos of myself where you could see my arms and legs. But on the other hand, if I were to keep looking back, hoping I looked and felt like that again, it would drive me crazy.
What about now? Is there a part of your body that you especially like?
No.
Really?
Well, I have long hair, and my sister is envious because it’s straight. She always tells me she loves it. I said I was going to cut it off, but she convinced me not to because it’s beautiful.
What do you think is the worst part?
Not being able to plan for the next day. You never know what you’ll be like. Can you wear shoes? Can you put on a bra? When you have something big to do and your foot cracks and splits open and you know you have to wear shoes and then your feet itch and it just drives you nuts. It’s horrible.
Do you feel resigned to the fact that you will have this forever?
I wish that one day I [would] wake up and it’s gone. And you do get that false hope when it does calm down, but you know it’s just going to be short-lived. I know that this is probably me forever.
What about getting close to someone again? Have you accepted that you’ll be single for the rest of your life, and are you are okay with that?
I don’t have any grand ideas that I’ll meet Mr. Right who wants to live with me happily ever after and doesn’t care about my psoriasis. But I have it all planned out. When my sons leave home, I’m going to live alone in a tiny house by the beach and make my little seascapes, and I will be just fine.