How to Find Psoriasis Support - Healthy Blue Zone

Living with psoriasis is a constant journey, often marked by physical discomfort, emotional challenges, and the continuous search for effective management strategies. Beyond medical treatments, finding robust support is crucial for navigating the complexities of this chronic condition. This in-depth guide provides clear, actionable steps to help you discover and leverage the diverse support systems available, empowering you to live a more fulfilling life with psoriasis.

The Indispensable Role of Psoriasis Support

Psoriasis is more than just a skin condition; it’s a systemic inflammatory disease that can impact your entire well-being. The visible nature of psoriasis, coupled with symptoms like itching, pain, and scaling, can lead to significant emotional distress, including anxiety, depression, and social isolation. This is where support becomes indispensable. It offers a vital lifeline, providing a space for shared experiences, practical advice, emotional validation, and access to crucial resources. Support isn’t a luxury; it’s a fundamental component of holistic psoriasis management, helping you to cope, advocate for yourself, and maintain a higher quality of life.

Consider Sarah, a 35-year-old marketing professional, who felt increasingly withdrawn due to severe scalp psoriasis. She meticulously styled her hair to hide flakes, avoided social gatherings, and struggled with self-consciousness. Her dermatologist was providing excellent medical care, but it was joining an online psoriasis forum that truly transformed her outlook. Through the forum, she learned about specific hair products for scalp psoriasis, discovered new coping mechanisms for itch, and, most importantly, realized she wasn’t alone. Connecting with others who understood her daily struggles provided immense relief and empowered her to seek further emotional support, ultimately leading to a significant improvement in her mental well-being and willingness to engage socially.

Navigating the Digital Landscape: Online Communities and Forums

The internet offers a vast array of psoriasis support options, allowing you to connect with individuals globally from the comfort of your home. These online spaces can be incredibly empowering, providing anonymity and accessibility that traditional in-person groups might not.

Identifying Reputable Online Communities

Not all online communities are created equal. Prioritize those associated with established psoriasis organizations, medical institutions, or known patient advocacy groups. These platforms are more likely to be moderated, ensuring accurate information and a respectful environment.

Actionable Steps:

Start with official organizations: The National Psoriasis Foundation (NPF) is an excellent starting point in the United States. Their “Talk Psoriasis” forum (found at psoriasis.org/talk-psoriasis) is a highly active and moderated community. Similarly, look for national or regional psoriasis associations in your country (e.g., Psoriasis Association in the UK, Psoriasis Australia).
Check for moderation: A well-moderated forum will have clear rules of conduct and moderators who actively enforce them, preventing misinformation, spam, or hostile interactions. Look for a “Code of Conduct” or “Community Guidelines” section.
Read reviews or testimonials: If a community isn’t directly affiliated with a well-known organization, search for reviews or feedback from existing members to gauge its reputation and helpfulness.
Observe the content: Spend some time reading posts before joining or participating. Does the content seem supportive, informative, and relevant to your experiences? Are members sharing credible information and constructive advice?

Concrete Example: Instead of simply searching “psoriasis forum,” try searching “National Psoriasis Foundation forum” or “American Academy of Dermatology psoriasis community.” Once on a potential site, look for a visible moderator team or a “Contact Us” section where you can inquire about their moderation policies.

Engaging Effectively in Online Forums

Once you’ve found a suitable online community, knowing how to engage can maximize your benefit.

Actionable Steps:

Introduce yourself (if comfortable): A brief introduction can help other members get to know you and your journey, fostering a sense of connection. For example, “Hi everyone, I’m [Your Name/Nickname] and I’ve been living with plaque psoriasis for 10 years. Currently struggling with itching on my legs and looking for tips.”
Start with specific questions: Instead of broad statements, pose clear, concise questions to elicit helpful responses. For instance, “Has anyone found a particular over-the-counter cream that helps with scalp itching, or a method for easily removing scales from hair?”
Share your experiences thoughtfully: While it’s a support group, avoid oversharing personal medical details without considering your privacy. Focus on sharing experiences that others might relate to or learn from. For example, “I’ve noticed my flares are worse during periods of high stress. Does anyone have strategies for stress management that directly impact their psoriasis?”
Offer support to others: The beauty of a community lies in reciprocal support. If you have advice or an encouraging word, share it. “I found that soaking in an oatmeal bath really helped my widespread itching last week. Maybe that’s something worth trying?”
Be patient and persistent: It might take time to find the sub-communities or individuals who resonate most with you. Don’t give up if your first few interactions aren’t exactly what you hoped for.
Verify medical advice: Always remember that advice from peers in an online forum is anecdotal, not professional medical advice. If someone suggests a new treatment or medication, discuss it with your dermatologist before trying it. “Thanks for the suggestion about [treatment name]! I’ll definitely bring that up with my doctor at my next appointment.”

Concrete Example: Instead of just posting “My psoriasis is bad,” try “My psoriasis on my elbows has been particularly red and painful lately. I’m using my prescribed topical, but the pain is impacting my sleep. Has anyone found specific pain relief strategies or sleep aids that are safe with psoriasis?” This prompts more targeted and helpful responses.

Unearthing Local Support: In-Person Groups and Events

While online communities offer convenience, in-person support groups provide a unique sense of camaraderie, direct interaction, and opportunities for shared activities.

Locating Local Psoriasis Support Groups

Finding a local group can sometimes be challenging, but several avenues exist to help you connect.

Actionable Steps:

Ask your dermatologist or healthcare team: Your medical professionals are often aware of local patient groups, workshops, or even individual patients willing to connect. “Do you know of any local psoriasis support groups or patient education events happening in the area?”
Check national/regional psoriasis organizations’ websites: Most organizations have a “Find a Local Group” or “Events Calendar” section. For example, the National Psoriasis Foundation lists local events and volunteer opportunities that often include support group meetings.
Contact local hospitals or community health centers: Many hospitals host support groups for various chronic conditions. Call their patient services or community outreach departments. “Are there any chronic illness support groups, specifically for skin conditions or autoimmune diseases, that meet here?”
Utilize online search with specific keywords: Combine your location with terms like “psoriasis support group [Your City/Region],” “dermatology patient groups [Your State],” or “chronic skin condition meetup [Your Town].”
Check community bulletin boards: Local libraries, community centers, or even some pharmacies might have bulletin boards where support groups post information.

Concrete Example: If you live in Dallas, Texas, try searching “psoriasis support group Dallas” on Google, then also visit the National Psoriasis Foundation website’s “In Your Area” section for Dallas. Additionally, when at your dermatologist’s office, explicitly ask, “Are there any local patient groups or educational sessions about psoriasis that you recommend?”

Maximizing Your Experience in In-Person Groups

Attending a meeting for the first time can feel intimidating, but preparation and an open mind can make it a rewarding experience.

Actionable Steps:

Go with an open mind: Don’t expect instant connection with everyone. Different people will be at different stages of their journey and have varying perspectives.
Listen actively: Pay attention to what others share. You might hear advice, coping strategies, or emotional sentiments that resonate deeply with you.
Participate at your comfort level: You don’t have to share your entire life story on your first visit. You can simply introduce yourself and say you’re there to listen and learn. “I’m [Your Name], and I’m new to this group. I’m looking forward to hearing everyone’s experiences.”
Ask clarifying questions: If someone shares a tip or resource that interests you, ask for more details. “You mentioned a specific type of cream; could you spell out the name for me?” or “Where did you find information about that clinical trial?”
Exchange contact information (if comfortable): If you connect with someone, politely ask if they’d be open to exchanging emails or phone numbers for further conversation outside the group.
Offer to help or share: If you have a relevant experience or resource that could benefit someone, offer it. “I found a great app for tracking flares; I can share the name if anyone is interested.”

Concrete Example: During a meeting, if someone shares how they manage the emotional toll of their condition, you might follow up by saying, “That’s really helpful. Could you elaborate on how you started with meditation, or if there are any specific resources you used?” This encourages deeper conversation and practical takeaways.

Leveraging Professional Networks: Healthcare Providers and Specialists

Your healthcare team is not just for medical treatment; they are also a crucial gateway to support resources and a source of professional guidance.

Engaging Your Dermatologist for Support Referrals

Your dermatologist should be your primary point of contact for all things psoriasis, including referrals to support services.

Actionable Steps:

Be explicit about your need for support: Don’t assume your dermatologist knows you’re struggling emotionally or socially. Clearly articulate your desire for support. “Beyond treatment, I’m looking for ways to better cope with the daily impact of psoriasis. Do you have any recommendations for support groups or patient resources?”
Ask about patient education materials: Many dermatologists’ offices have brochures, flyers, or digital resources from patient organizations. “Do you have any materials on managing the emotional aspects of psoriasis or information about patient advocacy groups?”
Inquire about specific programs: Some clinics or hospitals offer integrated programs that include access to social workers, psychologists, or patient navigators specializing in chronic conditions. “Are there any programs here at the clinic that offer mental health support or patient navigation for chronic diseases like psoriasis?”
Discuss mental health screenings: If you suspect depression or anxiety, ask for a screening or a referral to a mental health professional who understands chronic illness. “I’ve been feeling particularly down since my last flare. Would you recommend a mental health screening or a referral to a therapist experienced with chronic conditions?”
Seek referrals to other specialists: Psoriasis can affect joints (psoriatic arthritis), and a dermatologist can refer you to a rheumatologist. They may also connect you with nutritionists or other specialists if relevant. “I’ve started noticing some joint stiffness; should I consider seeing a rheumatologist?”

Concrete Example: During an appointment, instead of just discussing medication, say, “Doctor, I’m finding the emotional burden of psoriasis almost as challenging as the physical symptoms. Do you know of any counselors or therapists in the area who specialize in chronic illness, or perhaps a support group you recommend?”

Exploring Other Healthcare Professionals

A multi-disciplinary approach to psoriasis care can significantly enhance your quality of life.

Actionable Steps:

Psychologists/Therapists: Seek out therapists specializing in chronic illness, pain management, or body image issues. Cognitive Behavioral Therapy (CBT) and Acceptance and Commitment Therapy (ACT) can be highly effective. Ask your dermatologist for a referral, or use online directories like the American Psychological Association (APA) or local mental health associations to find specialists.
Social Workers: Hospital-based social workers can connect you with community resources, financial aid programs, and support services. Inquire at your hospital’s patient services department.
Nutritionists/Dietitians: While no single “psoriasis diet” exists, a nutritionist can help you identify potential triggers or dietary adjustments that might improve your overall health and possibly reduce inflammation. Look for those specializing in inflammatory conditions.
Pain Management Specialists: If you experience significant pain from your psoriasis or psoriatic arthritis, a pain specialist can offer various interventions and strategies.
Patient Navigators/Advocates: Some larger medical centers or patient organizations offer patient navigator services. These individuals help you understand your diagnosis, navigate treatment options, and connect with resources. Inquire with national patient organizations or your healthcare provider.

Concrete Example: If your psoriasis is causing significant emotional distress, contact your insurance provider to find in-network therapists specializing in chronic illness. Alternatively, ask your dermatologist if their hospital system employs a social worker who can provide a list of local mental health resources.

Harnessing the Power of Patient Advocacy and Awareness Organizations

National and international patient organizations are cornerstones of psoriasis support, offering a wealth of resources, educational materials, and opportunities for community engagement.

Major Psoriasis Organizations and Their Offerings

These organizations are dedicated to improving the lives of people with psoriasis through research, education, and advocacy.

Actionable Steps:

Explore their websites thoroughly: The National Psoriasis Foundation (psoriasis.org) is a prime example. Navigate through sections like “Life with Psoriasis,” “Connect with Others,” “Treatment Options,” and “Advocacy.”
Sign up for newsletters: Stay informed about new treatments, research breakthroughs, awareness campaigns, and upcoming events.
Utilize their helplines or patient navigation services: Many organizations offer direct support via phone or email, connecting you with knowledgeable staff who can answer questions or guide you to resources. The NPF’s Patient Navigation Center is an excellent example.
Attend their events (virtual and in-person): These can include educational conferences, webinars, workshops, and fundraising walks, all of which provide opportunities for learning and connection.
Access their educational materials: Look for guides, brochures, podcasts, and videos that explain psoriasis in accessible terms, covering topics from treatment to emotional well-being.
Check for Seal of Recognition programs: Some organizations vet products for people with psoriasis, indicating they are generally non-irritating and safe. This can be helpful for finding skincare or haircare products.

Concrete Example: Visit psoriasis.org and locate their “Patient Navigation Center.” You can call them directly with specific questions like, “I’m looking for financial assistance programs for my biologic medication. Can you help me find resources?” or “Are there any research studies for psoriasis near me that I might qualify for?”

Becoming an Advocate: Giving Back and Finding Empowerment

Beyond receiving support, becoming an advocate can be a deeply empowering way to give back and contribute to the broader psoriasis community.

Actionable Steps:

Share your story (if comfortable): Patient stories are powerful tools for raising awareness and influencing policy. Many organizations have platforms for sharing personal narratives. “I’m interested in sharing my journey with psoriasis to help others feel less alone. How can I submit my story?”
Participate in advocacy campaigns: This might involve contacting your elected officials to support legislation that improves access to care, funds research, or reduces healthcare costs for chronic conditions. Organizations often provide templates and guidance for these actions.
Volunteer your time: Whether it’s helping at an event, joining a local chapter, or assisting with administrative tasks, volunteering strengthens the organization and connects you with like-minded individuals.
Fundraise: Participating in or organizing fundraising events directly supports research and patient programs.
Educate others in your circle: By openly discussing your condition and its impact with friends, family, and colleagues, you help dismantle stigma and foster understanding. Share accurate information from reputable sources.

Concrete Example: The National Psoriasis Foundation often has “Take Action” campaigns on their website, providing pre-written letters or emails you can send to your representatives regarding issues like step therapy or insurance coverage for psoriasis treatments. Participating in one of these takes only a few minutes but has a significant collective impact.

Exploring Complementary Avenues for Support

Support for psoriasis extends beyond formal groups and organizations. Various other avenues can contribute to your overall well-being.

Mental Health Resources and Practices

The psychological burden of psoriasis is immense, and dedicated mental health support is often critical.

Actionable Steps:

Prioritize self-care: Engage in activities that reduce stress and bring you joy. This could be anything from reading a book, listening to music, spending time in nature, or pursuing a hobby. Dedicate at least 30 minutes daily to a self-care activity.
Practice mindfulness and meditation: Apps like Calm or Headspace offer guided meditations that can help manage stress and improve coping mechanisms. Even 5-10 minutes daily can make a difference.
Engage in regular physical activity: Exercise can reduce inflammation, improve mood, and help manage stress. Consult your doctor for an exercise plan that is safe and comfortable for your condition, especially if you have psoriatic arthritis. Try low-impact activities like swimming, walking, or yoga.
Seek professional counseling: A therapist specializing in chronic illness or body image can provide coping strategies, help you process emotions, and develop resilience.
Explore support groups specifically for chronic illness: If psoriasis-specific groups are hard to find, a general chronic illness support group can still offer valuable peer support.
Journaling: Writing down your thoughts and feelings can be a powerful way to process emotions, identify triggers, and track your emotional well-being.

Concrete Example: Start a daily gratitude journal, noting three things you are grateful for each day, regardless of your psoriasis symptoms. This practice can shift your focus and improve your overall outlook. Consider downloading a meditation app and committing to a 10-minute guided session daily, even if just before bed.

Financial Assistance Programs

The cost of psoriasis treatment, especially biologics, can be prohibitive. Various programs exist to alleviate this financial burden.

Actionable Steps:

Utilize pharmaceutical company patient assistance programs: Many drug manufacturers offer programs that can significantly reduce or eliminate out-of-pocket costs for their medications. Ask your dermatologist or their office staff for information on these programs for your specific medication. For example, if you are prescribed a biologic like Tremfya, visit the Tremfya website or call their patient support line for information on their “withMe Savings Program.”
Investigate co-pay assistance foundations: Independent charitable organizations can help cover co-pays, deductibles, and co-insurance for medications. Search online for “psoriasis co-pay assistance” or “chronic disease financial aid.”
Explore government programs: Depending on your income and location, you might qualify for state or federal programs that offer prescription assistance or broader healthcare coverage.
Talk to your pharmacy: Your pharmacist can sometimes identify discount cards, coupon programs, or alternative, more affordable generic medications if available.
Understand your insurance plan: Familiarize yourself with your deductible, co-pays, and out-of-pocket maximums. This knowledge helps you anticipate costs and plan accordingly. If you have commercial insurance, inquire about manufacturer-sponsored co-pay cards.

Concrete Example: When your dermatologist prescribes a new biologic, ask their nurse or administrative assistant if they have information about the manufacturer’s patient assistance program or co-pay card for that specific drug. Often, they have direct contact information or forms readily available.

Research and Clinical Trial Participation

Contributing to research not only helps advance understanding and treatment of psoriasis but can also provide access to cutting-edge therapies.

Actionable Steps:

Visit major research institution websites: Universities and medical centers often list ongoing clinical trials. Search for their dermatology or clinical research departments.
Check dedicated clinical trial databases: ClinicalTrials.gov (a service of the U.S. National Institutes of Health) is a comprehensive database of publicly and privately funded clinical studies conducted around the world. Use keywords like “psoriasis” or “psoriatic arthritis.”
Consult with your dermatologist: Your doctor might be aware of clinical trials that are a good fit for your specific condition and medical history. “Are there any clinical trials for new psoriasis treatments that you think I might be eligible for?”
Understand the commitment: Clinical trials require varying levels of commitment, including regular visits, specific procedures, and adherence to protocols. Ensure you understand what’s involved before enrolling.
Weigh the benefits and risks: Discuss potential benefits (access to new treatments, close medical monitoring) and risks (potential side effects, placebo group participation) with your doctor.

Concrete Example: Go to ClinicalTrials.gov and in the “Condition or disease” field, type “psoriasis.” Then, narrow your search by location, age, or study type. Review the eligibility criteria carefully for any trials that appear relevant.

Cultivating Your Personal Support Network

Beyond formal support structures, nurturing your personal relationships is paramount.

Educating Loved Ones

Your family and friends are your immediate support system, but they might not fully understand psoriasis.

Actionable Steps:

Open and honest communication: Explain what psoriasis is, how it affects you physically and emotionally, and how they can best support you. “Sometimes my skin hurts, or I’m really itchy, and it makes me irritable. It’s not you, it’s the psoriasis.”
Share reliable information: Direct them to reputable websites like the National Psoriasis Foundation or information from your dermatologist to help them understand the disease better. “Here’s a link to the NPF website that explains psoriasis really well; it might help you understand what I’m going through.”
Clearly define how they can help: Do you need someone to listen without judgment, help with daily tasks during a flare, or simply offer a distraction? “When I’m having a bad flare, sometimes just having you sit with me and watch a movie helps. Or, if I’m really tired, could you help with [a specific task]?”
Address misconceptions: Gently correct any misunderstandings, such as the idea that psoriasis is contagious. “Just a reminder, psoriasis isn’t contagious, so there’s no risk of catching it.”
Be patient: It takes time for people to fully grasp a chronic condition. Reiterate your needs and feelings as necessary.

Concrete Example: Prepare a simple, concise explanation of psoriasis for friends and family, perhaps a short paragraph you can share. “Psoriasis is an autoimmune disease where my immune system mistakenly attacks my skin cells, causing them to grow too quickly. It’s not contagious, but it can be really uncomfortable and impact my energy levels.”

Building a Stronger Support System

Expand your circle beyond immediate family and friends.

Actionable Steps:

Connect with others with shared experiences: This could be through online groups, in-person support meetings, or even casual encounters.
Engage in social activities: Don’t let psoriasis isolate you. Continue to participate in hobbies, clubs, or social events that you enjoy. This helps maintain a sense of normalcy and connection.
Seek out empathetic individuals: Gravitate towards people who offer understanding and validation rather than judgment or unsolicited advice.
Consider a “psoriasis buddy”: If you connect well with someone in a support group, suggest a one-on-one connection for regular check-ins and mutual encouragement.

Concrete Example: If you enjoy hiking, join a local hiking club. While you might not explicitly discuss psoriasis with everyone, the shared activity and social connection can be a powerful form of support, indirectly reducing feelings of isolation. If you meet someone in a support group who shares similar challenges, suggest grabbing coffee to discuss coping strategies more informally.

Finding psoriasis support is not a one-time event but an ongoing process of discovery, engagement, and adaptation. By actively seeking out reputable online communities, local groups, professional guidance, patient organizations, and nurturing your personal relationships, you can build a robust support network that empowers you to navigate the challenges of living with psoriasis with greater resilience and a profound sense of connection.