When you hear "psoriasis," you probably think of red, irritated skin. And while that's partially what it is, psoriasis goes much deeper than that. Psoriasis is actually a chronic condition that brings on many physical and emotional symptoms that don't just have to do with a person's skin.
Psoriasis is an autoimmune disease that occurs when a person's immune system sends "faulty signals" and causes skin cells to grow too quickly, the American Academy of Dermatology (AAD) explains. As a result, skin cells pile up on the skin surface, forming those characteristic psoriasis lesions. People who suffer from psoriasis can have skin flare-ups that show up as red, scaly, and/or itchy patches—and they can surface anywhere on the body where there is skin (including the scalp, eyelids, elbows, knees, you name it). The condition is believed to caused by a combination of genetics and external factors, according to the National Psoriasis Foundation.
But there are also different types of psoriasis that may appear differently on the skin and come with their own specific symptoms—and some people may have more than one. What's more, people who have psoriasis are also at an increased risk of developing a variety other health conditions, including psoriatic arthritis (a form of arthritis that affects some people with psoriasis), diabetes, and depression, among others, according to the National Psoriasis Foundation.
For people living with psoriasis, the condition can affect their joints, their ability to sleep comfortably, what clothing they can wear to avoid discomfort, their self-esteem, and much more. We spoke with nine of them about what life is really like with psoriasis—plus some of the biggest things people still get wrong about the complicated disease.
1. “When you have psoriasis, confidence is like a moving target.” —Melissa, 26
“I was diagnosed when I was just 2 years old. I had a small patch of a red rash on my cheek, and my parents brought me to see the pediatrician. We have a family history of psoriasis. But I didn’t have a formal skin biopsy to confirm the diagnosis until I was 5.
“When untreated, psoriasis covers more than 80 percent of my body, so my symptoms are very severe. I’ve had many sleepless nights due to the physical pain. Sometimes my skin feels like it is burning, and other times, it’s unbearably itchy. At one point in my life I actually had psoriasis all over my face, and when I’d wake up in the morning, I would need to use a hot compress on my skin in order to open my eyes.
“I have felt helpless and out of control at points. You totally have those feelings of, ‘Why me? Why not all these other kids?’ But I also remind myself that there is always someone in life who has it worse, and we are more than our ‘negatives.’ So I have to acknowledge that emotion, accept it, and move on.
“I’m also a former ballerina, and in ballet my psoriasis was no secret. I would move my legs and bleed through my tights because my skin would crack. Ballet is so much about perfection, and having psoriasis made me imperfect for the art form in a way. I would have partners that wouldn’t want to touch me because it looked gross, even though it isn't contagious. I missed out on roles because of it.
“But ballet is also where I found my strength—it made me feel present and capable. Dance helped teach me that there was so much my body could do; it wasn’t just diseased and sick. So while a normal reaction to psoriasis might be to feel depressed and hide in social isolation—and believe me I understand those feelings completely—I like to give the advice of focus on what you can do and find something that you enjoy and puts you out in the world. Dance, do a yoga class, go for a long walk, whatever makes you feel strong.”
2. “When my psoriasis started, I became very introverted and self-conscious about my skin.” —Brenda, 37
“I had just started junior high when I developed very thick, itchy plaque psoriasis on my scalp. The patches would get thicker over time and bleed when I scratched them. I didn’t want to tell my parents because I was a little freaked out and didn’t know what it was. After I got diagnosed, my mom would forcibly trim my nails every two weeks to keep me from scratching. By my 20s, it was all over my body.
“From ages 12 to 28, I was a mess. I played a lot of sports over the years to take out some of my emotions—tennis, softball, volleyball—but that meant wearing sports gear that would expose certain body parts. If my skin was really bad, I was allowed to wear tights under my shorts or an undershirt under my jersey.
“I am on a prescription treatment called a biologic now and it’s helping my skin, although I have a lot of damage to my legs from old lesions. I have hyperpigmentation, and because I have brown skin, you can really see the skin discoloration. Sometimes I wear tights under dresses, even in warm weather, because I’m still not always completely confident. Right now, the hardest thing I deal with is my mobility. Psoriatic arthritis is wreaking havoc on my joints.
“I wish I could tell my younger self that this condition is a roller coaster, and there will be ups and downs, but the downs are not forever. You have to go with the ebb and flow of psoriasis. Also, I would remind anyone with psoriasis to take care of yourself and be proactive about treating your condition. Experiment with things that work for you. I ignored mine for a while and tried to be in denial and be a normal teenager. But my normal was having psoriasis, so I had to change my definition of normal.”
3. “Psoriasis impacts every decision that I make, every single day.” —Sabrina, 33
“I was first diagnosed in high school. The spots started on my elbows and looked like red flakey patches. I had a leg up because my mom had psoriasis, so we knew to see a dermatologist and then a psoriasis specialist. That was vital for me, really understanding that it was genetic and having a specialist to work with me.
“Now, I have spots that I cannot get rid of on my elbows. I don’t think they’ll ever go away. I also have spots on my scalp and knees. I have tried everything as far as treatments go. But for the past two and a half years, I’ve been pregnant with my two children, so I didn’t really use any medical treatment during that time.
“Every day, I am considering my psoriasis triggers. Coffee is a trigger for me, for example, so I am always wondering if my coffee in the morning will cause a flare-up. I have to think about it when I enjoy a glass of wine too, or a beer with my husband. You really just never know what could cause a flare-up at any time. But those are also things that bring me joy in my life, and I’m not going to stop living.
“If I want to get down on the floor and play with my sons, I am thinking, ‘Are the flare-ups on my elbows and knees going to hurt too much to enjoy that time?’ My sons notice it and tell me, ‘Oh, mommy has a boo boo,’ and kiss it. So it affects their lives too. When I'm working on the computer, just leaning on the desks hurts my elbows. When I'm doing my makeup, I notice the patches. It’s constantly in the forefront of my mind.
“I’m 33, and still to this day people ask me, ‘Oh, have you tried this lotion? My sister has dry skin!’ I know people mean well, but honestly, those experiences make me rethink the way I respond to somebody if they mention they have any type of health condition. They probably have tried whatever treatment you’re about to suggest, right? Those sorts of comments can get annoying and it’s worth pausing before you weigh in.”
4. “I’ve canceled outings with friends because I feel like I physically can’t move.” —Jennifer, 34
“In 1999, I was diagnosed with psoriasis, and about a year later, I was diagnosed with psoriatic arthritis. The first sign of psoriatic arthritis I noticed was having knee pain in the morning. I thought maybe it was some weird growth spurt. My knee would feel like it was giving out when I stepped out of bed. I couldn’t support myself—I thought maybe I sprained it.
“After a few doctors appointments, I learned that it was psoriatic arthritis affecting my joints. I also feel it in my lower back; I will try to stand up out of a chair at work, and it might take me 20 minutes before I truly feel like I can stand up and walk comfortably.
“I have to set my alarm early just to give myself time to muster up the strength to get out of bed. My joint are so stiff in the morning that I have to stretch my body out in the morning while I’m still in bed. Sometimes I even feel pain in the middle in the night.
“Not everyone who has psoriasis develops psoriatic arthritis, but I think it’s important to watch out for symptoms. The sooner you catch it, the less joint damage it can do. If you wait too long, the joint damage can be irreversible.
“Many people think that psoriasis is ‘just a skin thing.’ Psoriasis isn't just an external disease, it’s an autoimmune disease that starts from the inside our bodies. We can’t just put a lotion or topical medication on our skin and consider ourselves healed, even if goes away visually for a period. We have to treat the source inside our bodies.”
5. “Medication helped me physically function more normally—but spiritual work and focusing on my mental health is what really makes my psoriasis less debilitating.” —Nitika, 37
“I was 10 years old when I was diagnosed with psoriasis. I had one tiny spot on my left arm, maybe the size of a dime. I had never had anything on my skin before, so I remember going into my bathroom and examining this weird itchy spot. My parents had really mild, almost nonexistent, eczema, so they assumed it was eczema. I had to get a skin biopsy done, and I remember my uncle saying, ‘I hope it’s not psoriasis!’ But I didn’t understand what that meant at the time. I had plaque psoriasis.
“Before I knew it, everything was changing. I ended up getting it from the top of my foot to the tip of my head. That transpired over the next few years. People thought I looked like I was burned all over my body. It appeared like big red ‘slats’ covering my body.
“I developed psoriatic arthritis when I was 19. I thought, ‘Isn’t arthritis what old people get?’ I had never heard of anything like it. I have a vivid memory of being in my dorm room, unable to open the plastic bag inside of a box of cereal because my hands ached too badly to rip it open. I ended up not being able to walk without pain for several years of my life.
“I’m 37 now, and it’s only been the last couple of years that I was able to really get to a place where I’ve found the combination of treatments that really works for me. I ended up having to take medication many years ago, and that’s been really helpful. But I also have self-care techniques in place to make it more holistic.
“There’s emotional trauma that comes from having a health condition like this that’s very debilitating. So I meditate and am very spiritual. I take time to be still and find my center, to feel grounded and stable. I just needed something bigger than myself to believe in because my body was so challenging.”
6. “Things that most people would consider normal, everyday behaviors are big deals for people with psoriasis.” —Talya, 45
“I was first diagnosed when I was 12 years old, but the patches were very small and hidden underneath my hair at the base of my scalp. When I was in my early 20s, the patches got worse—so bad that I used to shave the back of my head to air it out.
“In 2001, when I went to become a yoga teacher, I broke out in the middle of my training with psoriasis all over my body. It looked like angry, itchy welts that covered the front of my abdomen, parts of my neck, my armpits, inner groins, and a little bit of my face.
“There have been lots of hard parts about living with psoriasis for 17 years. For one, I’ve had psoriasis flare-ups adjacent to my sexual organs, and it’s been embarrassing and shameful to allow myself to be seen naked by sexual partners and/or to enjoy sex.
“I'm also an Ayurvedic practitioner and I teach people how to live healthy lives. So sometimes I've felt like a fraud for having an autoimmune disorder that can’t be ‘cured.’ But it’s really important to me to show my clients that, no, I’m not perfect—and I have nothing to hide. Even though health is really my platform, having a chronic condition like this doesn’t make you any less healthy.”
7. “Once you have a breakout, you second-guess everything. You’ll be cognizant of the foods and beverages you drink, the level of stress that you're under—nothing feels worth another breakout.” —Theresa, 27
“I never had skin issues until I moved to New York City. I was under a lot of stress working in the fashion industry, and after about five months working in the city I started to notice my arms, legs, ears, and scalp would get super itchy, even after I showered. I initially thought maybe it was just a reaction to being in a new city and environment. But soon enough, it got worse, and I was diagnosed at age 24.
“Once you have a breakout, you have to let the psoriasis go through its stages—essentially until it dries out. This could take months depending on your treatment method. Sometimes it leaves scars and it can affect your self-esteem. I'm extremely thankful that my lesions have all shrunk and disappeared after each breakout.
“It affects your body inside and out. Psoriasis can have a direct impact on your joints and body inflammation. I’ve found that doing more yoga has helped soothe the pain of my joints as well as the stiffness that psoriasis can bring on.
“I wish people knew that psoriasis is extremely common. So if you see someone who looks like they have a skin disease, don't freak out. I used to stay away from people on the subway with skin issues, until I got diagnosed and realized it's not something that goes away easily—and it's certainly not contagious.”
8. “From an aesthetic standpoint, even if I just say, ‘I have psoriasis,’ people immediately pass a slight judgment, even if they don’t mean to.” —Rebekah, 36
“I was about 16 when I first started noticing it. I used to wear headbands, and they would get caught on scaly patches of skin in my hair. I wrote it off as dandruff, but then I started getting flakes in my ears and knew something was off. I went to appointment after appointment trying to get it figured out. But the telling sign that my doctor noticed when I was finally diagnosed was pitting on my fingernails.
“As a teenager and young adult, it was horrible. In college, I remember being in the dorm with my girlfriends and having to put medication on my head and sleep in a shower cap. It was embarrassing. That’s not what young college girls are normally dealing with.
“People also pass judgment, and I get the vibe sometimes that it’s totally subconscious. For example, if you scratch your head, people immediately start scratching their head. It’s personal though. My psoriasis is mine. It’s not contagious.
“Even when I go to a new hairstylist, they might notice dandruff-like specks on my shirt or in my hair. And then I always feel obligated to tell them I’m not dirty, or, no, I don’t have horrible dandruff. I have psoriasis. I feel like apologizing, but this is just a chronic condition I have. I can’t really apologize for that.”
9. “It feels like my shoulder is dislocating if I reach up too quickly sometimes.” —Ronni, 31
“I was diagnosed in 2004. The first thing I noticed was a patch on the inside of my wrist. I originally thought it was ringworm because it was circular. My mom took me to the doctor and they thought it was ringworm and gave me an antifungal cream. Unfortunately, using the cream seemed to make my psoriasis flare even worse. It got everywhere—I’m talking like 70 percent of my body. I went back and forth with doctors, and I finally brought up psoriasis because my cousin had it, so I was finally referred to a dermatologist and got diagnosed. It was an eight or nine month process.
“On top of that, I developed psoriatic arthritis—so sometimes I feel like I’m just the poster child for psoriasis. It really started to flare up this past year. It feels like joint pain and stiffness, especially in the morning or if I’ve been sitting too long. My shoulder joint is very painful.
“For me, the hardest part of my psoriasis is the psychological aspect—the mental stress lasts longer than the actual flares. For instance, even now, my legs are clear but I still feel self-conscious about wearing shorts. I’ll ask my husband, ‘Can you see this dark spot on my thigh?’ And he’s like, ‘No one would notice that!’ But I notice.
“Also, when you have psoriasis, you’re always afraid that whatever treatment is working for you will stop working at some point. I was on other medications that didn’t work for me after a while, and so I always worry about the one that I’m on now, which is a biologic, not working down the line and then having to go back to the drawing board.”
Responses have been edited for length and clarity.