Psoriasis can affect your whole life
Psoriasis is still pretty misunderstood. If you have psoriasis, realizing that other people know what you’re going through can make you feel a little more validated in your own journey with the condition. And if you don’t have psoriasis, learning some simple facts about it—straight from the people who experience it every day—can help you better understand what it’s like. Here’s what four people with psoriasis wish everyone knew about the condition.
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1. Psoriasis is an autoimmune disease—it’s not due to poor hygiene, and it’s not contagious.
An autoimmune disease is a condition where your body’s immune system mistakenly attacks healthy cells, the U.S. National Library of Medicine explains. Different autoimmune conditions affect different types of cells in the body. In psoriasis, the skin cells are targeted. As with many other autoimmune conditions, experts are still trying to pinpoint what exactly causes psoriasis. The theory is that certain people are predisposed, and then something in the environment triggers the immune system and causes it to malfunction, according to the Mayo Clinic. But researchers are still trying to figure out what, exactly, is going on when someone develops psoriasis.There also seems to be a genetic component. According to the National Psoriasis Foundation, there’s an approximately 10 percent chance you’ll get psoriasis if one of your parents has it. That number rises to around 50 percent if both parents have it. But some people do get psoriasis with no family history.
What we do know: The way a person takes care of themselves can’t cause psoriasis. Nor can what they put on their skin. It’s also not contagious. These kinds of myths can have deeply harmful and insidious effects on how people treat those who have this condition. Cristie N., 26, who shares about her psoriasis on Instagram to help spread awareness, says that if someone notices her condition, she tells them “I have psoriasis. It’s not contagious. It’s an autoimmune skin condition.” She often explains more details about the condition, because she wants to help people understand what it is.
2. The pain and discomfort can be unrelenting.
“I think something a lot of people don’t understand is how uncomfortable it can be,” Jena L., 31, who has had psoriasis since she was a kid, tells SELF. “It is really uncomfortable and itchy, and if it’s in the folds of your skin, it hurts really bad.” Jena’s psoriasis is limited to mostly her ankles and sometimes her elbows, and she says that it causes her at least some amount of discomfort every single day. “I pretty much am always aware of it,” she says.Rubbing, either of the skin-on-skin variety or from clothing, can exacerbate the itchiness and soreness. Robin B., 61, who has had psoriasis for over 15 years, says that before she got on an effective treatment, she had to be careful about the clothing she wore. “There were certain undergarments I couldn't wear because it would cause more friction in that area, and it was really painful,” she says. “Until it cleared up, there were certain shirts and fabrics I had to be more careful with.”
3. Psoriasis can take a toll on a person’s mental health.
Lauren K., 35, says she’s been surprised by how self-conscious her psoriasis has made her. “Physically, there are times when I forget about it for the most part—it really just doesn't bother me unless there is a flare-up. But I am very aware of the fact that people can see it,” she says.Because psoriasis is often misunderstood, many people with the condition feel embarrassed or self-conscious about it. Cristie says that in grade school, she became “a master at hiding it,” because she was so afraid of what people might think it was. “Sometimes people would notice it and it was the most terrifying experience for me,” she says. (Now, she’s on effective treatment and has learned to not be bothered if someone ever notices symptoms. She welcomes it as an opportunity to educate them on the condition, she says.)
Self-consciousness about psoriasis can lead people to dress differently. “It really affects my wardrobe,” Lauren says. She explains that she always wears sleeves on first dates and to more formal affairs, like job interviews, so that her elbows are covered. “Appearances generally don't mean too much to me,” she says. But she still feels like she has to hide any flare-ups from people who don’t know her and may not know that psoriasis is the cause.
Similarly, Robin says that she stopped wearing black when her scalp psoriasis used to be really intense because the flakes would shed and be very apparent on her clothing. This constant worrying about if someone will notice a flare-up, and what they might think about it and you as a result, is a shared experience among many people with psoriasis.
4. It’s not always easy to pinpoint or control psoriasis triggers.
Psoriasis often goes through cycles of being actively inflamed (called flares or flare-ups) and then subsiding for some time. Flares can happen due to a variety of triggers, and everyone’s triggers vary. According to the Mayo Clinic, common psoriasis triggers include infections, injury to the skin (such as a cut, bug bite, or severe sunburn), weather, stress, smoking, heavy alcohol consumption, and certain medications. Some of those things are much easier to control than others.Stress, in particular, is a tough one. “My psoriasis is really triggered by prolonged stress,” says Cristie. Unfortunately, keeping stress levels low at all times just isn’t possible (if only it were), and stress can also be unpredictable. Sure, you can do things to help manage stress, like meditate and exercise regularly, but stress is a part of life—especially given the state of the world right now.
For Jena, weather is a biggie when it comes to psoriasis triggers. She lives in Florida, and she’s had intense flare-ups in the past when she’s visited New York City in the winter for work. “When it’s really flared up and it’s in the cracks and crevices of my hands, it just hurts to do anything. And sometimes they bleed,” she says. While normally, the discomfort she feels from psoriasis is bearable, she says that this is one of the times where the condition really impacts her quality of life and makes it difficult to do simple things, like open a twist-off lid on a bottle. She can also experience flares in very hot and dry temperatures. “It’s extremely painful and starts to spread to more areas on my ankles or into my feet,” she says.
Lauren has a similar experience. “You can predict the weather with my elbows,” she jokes. Lauren also notes that she really hasn’t been able to pinpoint and control her triggers, despite having psoriasis for about 15 years. “It’s stress levels, weather, allergens, my diet… it’s too much to keep tabs on.”
While some people may be lucky to have one or two clear triggers, others may find that multiple factors play a role in causing psoriasis flares. It’s just another thing about the condition that makes it difficult to predict.
5. Treatment can be tricky and often requires a good amount of trial and error.
Suggestions for simple fixes—like, “all you need to do is change your diet or get more sun”—are extremely frustrating for people with psoriasis. “I’ve done everything,” says Cristie. “The biggest thing I want people to understand is that for some people it’s not something you can fix really easily.”In fact, it can take a lot of trial and error to figure out what medications make a difference in your psoriasis. Trust: If there were an easy fix, everyone with psoriasis would be using it.
Topical options—such as lotions and ointments—are often the first treatment that doctors give people with psoriasis, the Mayo Clinic says. Light therapy is another type of treatment, often for moderate to severe psoriasis. It involves exposing the affected skin to UV rays (using a special device) on a regular basis. Other treatment options for moderate to severe psoriasis include oral medications and biologics, which work by altering the immune system and are given by IV infusion or injection.
The thing is, there’s no way to predict which treatment a person will respond to. The only way to know is by trying one, seeing how it goes, and switching to another if it doesn’t work. Which is why it’s so important to work with a specialist who knows how to treat psoriasis—usually a dermatologist, rheumatologist, or both.
Jena has personally gone through a lot of trial and error and is still figuring out how to treat her psoriasis. She says she’s probably used 100 different creams and ointments over the years, all of which either did nothing or worked for a short amount of time and then became ineffective. She’s also tried steroid injections, given in her ankles, where she was most flared at the time. Those seemed to help, but didn’t seem worth the pain to her (she describes herself as “not good with pain”). Since she only has psoriasis on a small portion of her body, she hasn’t tried more intensive oral or injection treatments yet.
6. The “best” treatment can vary a ton from person to person.
Cristie, for example, takes a biologic that controls her psoriasis well, so she is flare-free most of the time. Lauren keeps a steroid spray on hand to use when she has a particularly itchy flare-up. Robin is on biologic and oral medication, and she rarely notices her psoriasis anymore. The “best” treatment for each person will depend on factors like where the psoriasis is located, how often it flares, and how much it impacts their quality of life.How the treatment itself impacts a person’s life matters, too.
Jena says she did light therapy three days a week for six months and thinks it definitely helped. But it was a hassle to keep up with, so she stopped. “I got sick of driving 30 minutes every three days to the dermatologist,” she says. “I didn't see it as a long-term solution that was sustainable. It was very expensive, too.”
Since psoriasis can be tricky to treat, it’s not uncommon to see a few different doctors before finding someone who knows how to help. “I had to go to several dermatologists before it was properly diagnosed,” Robin says. Once she got on a good regimen, though, she was able to get her psoriasis under control long term.
It’s unfortunate that so many people with psoriasis can relate to the lengthy process that can be involved with finding the right treatment, but the light at the end of the tunnel—finding relief from the constant discomfort of psoriasis and even the stigma—can be worth it.
https://www.self.com/story/psoriasis-life-facts
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