Living with psoriasis can be challenging — and telling others about your experience can sometimes be just as difficult. Having a condition like psoriasis often means wanting to talk about details that most people don’t fully understand.

At MyPsoriasisTeam, members have shared what topics they’d like to hear more about and what details they want others to know. Here are some of the points and concerns they’ve raised.

1. Relationships With Health Care Providers Can Be Challenging

Finding the right dermatology provider can be difficult. One member said their biggest issue is that they “keep getting appointments canceled.” Others said they felt like their doctors didn’t listen. One member mentioned “doctors ignoring how much pain you are in,” adding, “I often feel like I’m being punished for other people’s addictions.” Another said, “I am tired of [doctors who] don’t care how I am feeling.”

Many members have found a doctor they trust — but that makes finding a new provider all the more distressing if, for example, they move or their doctor retires or relocates. One member put it this way: “Losing a doctor can feel like being cut off of life support, what with the major meds needed to keep going.”

“Losing a doctor can feel like being cut off of life support, what with the major meds needed to keep going.”
— A MyPsoriasisTeam Member

2. Psoriasis Affects the Entire Body

Many people may think psoriasis affects only visible skin, but it can also involve areas such as the scalp and hair. Psoriasis is more than a skin condition — this autoimmune disease occurs when the immune system mistakenly attacks healthy cells. “The fact that it’s an autoimmune disease makes all the difference in understanding it as well as its treatment,” one member said. “Even some dermatologists still have an approach of treating the skin solely from the outside.”

Others said they want people to know that psoriasis is systemic (affects the whole body). “Autoimmune diseases don’t only affect just what you see. Getting rid of inflammation in general is tricky,” explained one member.

Another added, “Unfortunately, because your immune system is affected, the body is affected — all of the body is vulnerable.”

“Unfortunately, because your immune system is affected, the body is affected — all of the body is vulnerable.”
— A MyPsoriasisTeam Member

3. Other Diseases Can Occur With Psoriasis

Although psoriasis can occur alone, people may have other related health conditions, called comorbidities. Psoriasis is associated with conditions including:

• Diabetes
• Sleep apnea
• Anxiety
• Cardiovascular disease
• Crohn’s disease

Members said they wish that others, including their doctors, knew more about this. “The inflammatory process affects your entire body, causing increased fatigue and brain fog and increased risk of other health conditions,” one member commented.

One member described the challenge of getting all the necessary medical care. “I don’t think providers talk enough about who is going to coordinate comorbidity care and screening,” they said. “I went for over five years without anyone checking my cholesterol, blood sugars, etc., even though I am at higher risk than the general population.”

“I don’t think providers talk enough about who is going to coordinate comorbidity care and screening.”
— A MyPsoriasisTeam Member

4. Psoriasis Affects Everyday Life and Relationships

Living with psoriasis can affect many aspects of daily life, including relationships with family and close friends. Members shared how the unpredictability of their symptoms can make it hard to plan or keep commitments. One member described “not knowing what every day is like physically — planning is tough.”

Another agreed and mentioned “the difficulty of working or committing to any endeavor with any regularity.”

Studies show that people living with psoriasis are often socially isolated, which affects their quality of life and overall sense of well-being. Some members reported feeling like they couldn’t live the way they wanted or be who they wanted. “I feel like I am constantly socially canceling and not being able to follow through for my children and family,” one member shared.

Others described withdrawing from others because being social with psoriasis was so difficult. “My life keeps getting smaller,” one member said.

Members described the challenge of helping others understand just what it means to live with psoriasis. “It can be difficult to get others to understand what you’re going through,” one member said. Another wanted to know “how to explain to friends/family all the comorbidities that come with it.”

5. People With Psoriasis Are at Risk of Mental Health Conditions

Some mental health conditions are more common among people with psoriasis than in the general population, including:

• Anxiety
• Depression
• Substance-use problems
• Suicidal ideation

Note: If you or someone you know needs help, you can contact the 988 Suicide & Crisis Lifeline by calling or texting 988 or chatting online.

Some members emphasized the importance of talking more about these psoriasis-related issues. One shared, “For me, it’s how we are affected mentally. I have never been asked by doctors. Feeling depressed is a common thing for me. I tend to deal by myself.”

A member whose child lives with psoriasis said, “I think the mental stress is the hardest for my son.”

Researchers believe that addressing mental health and quality of life are key to effective psoriasis treatment. They recommend that doctors focus not only on reducing inflammation but also consider resources such as therapy, mindfulness practices like meditation, and mental health medications for people living with psoriasis.

6. There’s a Lack of Information About Complementary Treatments

Members have described managing psoriasis flare-ups with lifestyle or alternative approaches such as:

• Changing their diet
• Using supplements
• Reducing stress
• Getting more sleep

Some complementary or alternative therapies have evidence to support them, whereas others have little or none.

Members of MyPsoriasisTeam have reported success with some of these approaches. “I feel there isn't enough talk about diet and natural remedies,” one said. “I feel since I changed my diet to gluten-free and began doing qigong, my symptoms are very minor.” Qigong is a form of exercise used in traditional Chinese medicine.

“I learned that certain foods, additives, environments, and lack of sleep really made things pretty lousy, and even some pain medications made things worse,” said another member.

Complementary or alternative treatments may be helpful for many people who live with psoriasis, but different people have different results. What works for one person may not benefit another. Always talk with your dermatologist, rheumatologist, or both before making any changes to your treatment plan. It’s important not to add any supplements without talking to your doctor. The U.S. Food and Drug Administration (FDA) does not regulate supplements as rigorously as it does medications. You should not stop taking any medications, whether topical creams (applied to the skin) or oral drugs (taken by mouth) such as biologics, without your doctor’s guidance.

Talk With Others Who Understand

On MyPsoriasisTeam, the social network for people with psoriasis, and their loved ones, more than 132,000 members come together to ask questions, give advice, and share their stories with others who understand life with psoriasis.

What topic do you wish people talked about more when it comes to psoriasis? Share your experience in the comments below, or start a conversation by posting on your Activities page.