Navigating sex, dating, and relationships is always tricky. But if you’re among the estimated 7.5 million Americans with psoriasis, a chronic autoimmune condition that causes painful patches of red or scaly skin that can crack and bleed, that challenge is multiplied.
The external symptoms of psoriasis can have an impact on your quality of life and ability to socialize.
“When strangers ask if you have herpes or you’ve been burned or just continue staring, I don’t think they realize the impact it has on you or your mood, or even the confidence it took just to get out of bed when you’re flaring horribly,” says Michelle Lee, 24, of Los Angeles, who was diagnosed with plaque psoriasis at age 20.
Lee recently joined a Healthline roundtable of people living with psoriasis. They discussed the ways psoriasis can impact your social life, and things you can do to manage.
This chronic autoimmune disease causes a rapid build-up of skin cells that appear as thick, scaly patches typically on the joints, such as elbows and knees, but also on the hands, feet, neck, scalp, face, and genital region.
It ranges from mild to severe, according to the placement, body surface area, and severity. It often comes and goes in cycles.
Psoriasis is caused by an interplay of genetics and the immune system. Symptoms vary by individual and by type:
- Plaque psoriasis is the most common type. Red, inflamed patches, often covered with whitish-silver scales or plaques, cover spots such as the elbows, knees, and scalp.
- Guttate psoriasis, more common in children, causes small pink spots that aren’t typically thick or raised, usually on the torso, arms, and legs.
- Pustular psoriasis, more common in adults, causes white, pus-filled blisters and large swaths of red, inflamed skin, but typically affects smaller areas of the body, such as the hands or feet.
- Inverse psoriasis typically appears as patches of red, shiny, inflamed skin, most often around the armpits, breasts, or groin.
- Erythrodermic psoriasis can affect large areas of the body and cause scales that slough off in sheets. This rare and severe type of psoriasis can be life threatening and requires immediate medical attention.
Along with the physical effects of the condition, people with psoriasis can experience:
- a loss of self esteem
- self-stigma
- social anxiety
- distress
- thoughts of self-harm
- changed sexual function
Psoriasis can have a huge impact on your quality of life.
Participating in activities and socializing are part of what give you a full and meaningful life, says Dr. Matthew Boland, a Nevada-based clinical psychologist who specializes in chronic conditions. So if shame or stigma about a person’s appearance interferes with their daily life, the burden can grow.
His first step for someone in this situation is “validating how stressful this really can be.”
The first time Jassem “Jas” Ahmed, 30, became bed-bound from a severe flare-up of his plaque psoriasis, he remembers thinking, “My life is over — I don’t want to live like this anymore. I literally can’t move. This is not any life to live.”
But once he recovered, he learned that even the worst outbreaks are ultimately temporary.
“Stress creates this inflammatory response in the body and an activation of your nervous system to just be revved up,” says Boland. “That can actually activate periods or episodes of increased inflammation, so a lot of what my work focuses on is breaking that pattern of stress.”
Social stress can worsen psoriasis. But management strategies can help.
DaQuane Cherry, 23, originally from North Carolina, was diagnosed with plaque psoriasis at age 12, developing patches on his scalp that were visible through his short haircut.
“Growing up, anything foreign can easily make you a target for bullies,” Cherry says. “I was the only person I knew who had psoriasis and it made me feel like an outcast.” He remembers being asked if his condition was contagious (it’s not) or if it hurt. “That deteriorated my confidence,” he says.
So how do you combat the stigma, shame, and embarrassment that may come with having visible psoriasis patches on the skin?
For Ahmed, who’s based in London, a core group of friends he’s had from age 5 never let him wallow. “They forced me to go out,” he says. “They didn’t treat me like I was sick.”
He appreciates that they teased him, making up a superhero name for him, “Joriasis,” and saying his superpower was leaving skin on the floor. “I like that they didn’t let psoriasis define me,” he says. “It allowed me to become more me.”
“Hooking into resources like support groups can provide some sense of acceptance or accepted ability,” says Boland.
Some support groups to try are:
- MyPsoriasis Team, an online community run by the National Psoriasis Foundation
- Healthline’s Living With Psoriasis Facebook group
Lex Beckman, a copywriter and inclusion advocate in California, was diagnosed just 6 months ago. With psoriasis, she explains, you have to weather the peaks and valleys that come along with it, in addition to managing a chronic skin condition.
“It takes a positive mindset and a lot of resilience to talk yourself through those moments of doubt, when you feel really low, to where you can eventually get back to that peak,” says Beckman.
When you’re experiencing anxiety or depression, “there are so many negative things you’re telling yourself through those moments,” says Boland.
He uses cognitive behavioural therapy to walk people through those moments and understand the thoughts and beliefs at work, helping them see things more objectively.
The goal is to “talk yourself through those moments to reduce stress and reduce inflammation.”
After her diagnosis, Lee photoshopped her profile picture on social media because she wasn’t ready to reveal her psoriasis to the world. When she finally did post a photo, it was on a separate page, as if compartmentalizing that part of herself.
Ahmed took the opposite approach. “My online dating game was trial by fire,” he explains. After talking to someone on a dating app, he’d offer to send photos — and he’d send shots of his psoriasis at its worst.
“One of two things would happen: They either didn’t say anything, blocked me, or deleted me,” he says, “or, they would say, ‘Oh, that’s really bad, can I help?’ And then we’d carry on the conversation as if it’s nothing, and that way I would know, ‘OK, there’s something here.’”
Cherry has learned that when it comes to intimacy, he gets in his own way. “It’s more me that’s the problem when it comes to dating and sex life, versus partners that I’ve had in the past,” he explains.
“I’m an overthinker, I have a lot of anxiety, so it caused me to feel self-conscious, especially when I would have flare-ups down there.”
His feeling has been, “Before they could judge me, I’m going to judge for them.”
There’s no doubt that having psoriasis on your body — especially genital psoriasis, with its itching and pain — can affect your approach to getting intimate.
“Even in a relationship, even when you’re so close to somebody and you live with them, and you see them every day, it can be difficult to have those hard conversations,” says Beckman, who initially shied away from sex after her diagnosis.
“Ultimately,” she adds, “my partner loves me no matter what, and he’s been extremely supportive, and that’s helped instil confidence in me.”
Lindsey Bliss, a childbirth educator in Queens, New York, who’s been married for over two decades, says her psoriasis sometimes interferes with her sex life.
“I’ve had plaques all over my vulva and in my butt crack. I haven’t been physically intimate for extended periods of time because it hurt — I was bleeding,” she says, adding, “it impacted my marriage.”
A 2018 review found that the prevalence of lesions in the genital area was lower than reported changes in sexual function in people with psoriasis. The authors found that anxiety, depression, self-stigma, and treatments for psoriasis could contribute to sexual distress.
Touch is important for well-being, notes Dr. Susan Bard, board certified adult and paediatric dermatologist in private practice in New York City and clinical instructor at Mt. Sinai and Cornell. “When you treat somebody’s physical manifestations, the psychological manifestations of their disease can improve dramatically as well,” she says.
Accepting the feelings that go along with flare-ups has been helpful for Cherry. “I know a lot of people try to ignore the depression or ignore the sad feelings, but I embrace them,” he says.
“I’m a big believer in acknowledging when I’m sad or angry because I know it’s temporary — this is not my feeling for the rest of my life.”
Bonding with fellow people with psoriasis can be validating. When Lee first Googled psoriasis, she fixated on the idea that it would be forever.
“I was in a dark, dark place,” she says. But joining the psoriasis community on Instagram helped her “realize there are so many other people living through it,” Lee says, “and hearing and seeing their journeys is what ultimately got me out [of that dark place].”
When anxiety or depression gets overwhelming, medication can help.
A 2020 study in the Journal of Affective Disorders found that antidepressants appeared to have a protective effect against psoriasis in people with depression, actually lowering inflammation, which in turn alleviates both depression and autoimmune problems, according to the findings.
After her diagnosis during the summer of civil unrest following George Floyd’s death, Beckman took an online self-assessment and decided to be proactive about seeking treatment for her anxiety and depression. “Once I started, I saw a huge change in my mindset — and then a huge change in my psoriasis and in my skin.”
Ahmed’s best advice to the newly diagnosed: “Learn to accept it,” he says. “Once you do, you can then start learning to enjoy your life again and stop obsessing."
Self-acceptance is the key to gaining the acceptance of others for people with psoriasis, according to 2020 findings in the journal Experimental and Therapeutic Medicine.
A key to acceptance for Ahmed has been to put things in perspective. When he was bed-bound and longed to be able to wear a T-shirt again without feeling pain, he learned how trivial a lot of his problems were. “Now whenever I have a problem with work, I don’t care as much because I can wear a T-shirt!” he says.
It took moving on from a victim mindset for Bliss, who also has psoriatic arthritis, to make peace with her condition. “I shifted the narrative to, ‘this is just a thing that I have to live with — it’s not something that defines me,’” she says. “It’s taken me probably, like, my whole life to get to this place and to realize that healing is not a destination.”
For Beckman, self-love comes from rock climbing, yoga, meditation, and taking oatmeal baths. “I’m making time for myself, living with gratitude and slowing down,” she says.
Cherry’s road to self-love involved showing his skin to the world and being more mindful about his negative self-talk. He’ll say, “I know I’m having this type of feeling — but it’s not going to define me.” It’s made a difference. “You’re still going to have psoriasis, but it’s going to affect you in a different way,” he says.
Lee also challenges her critical inner voice. “Psoriasis taught me how to speak to myself,” she says. “Now when I think, ‘Oh, are you stupid, or oh, why do you look like this, I know how to stop myself. I’m like, ‘No, your body is your vessel, you’re doing great. You look beautiful.’ It sounds so silly and cheesy,” she adds, “but speaking to myself in a beautiful manner changed so much for me.”
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