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8 Ways to Build the Support System You Need When You Have Psoriasis

8 Ways to Build the Support System You Need When You Have Psoriasis

Living with a chronic condition is tough, so create the safety net you need to thrive.

Psoriasis is an autoimmune condition involving inflammation in the skin, causing red, itchy patches of scaly skin. In those with psoriatic arthritis, it causes joint pain as well. But really, it affects much more than just your skin or joints. Psoriasis can negatively affect your mental health, your social life and intimacy. People with psoriasis have a higher risk of depression, for example, than those who don’t have it, so it’s important to have a support network.

“Psoriasis is a chronic condition, so support groups can be helpful to discuss symptoms, treatments and side effects with others going through it,” said Doris Day, MD, a dermatologist at Lenox Hill Hospital in New York City. “Psoriasis is a pro-inflammatory condition that can affect other organs besides the skin.”

First, be sure you have the medical care you need. “It's important to have a multidisciplinary team—a dermatologist, internist, rheumatologist, cardiologist and GI doctor as needed and depending on signs and symptoms,” Dr. Day said.

After that, work on the additional supports you’ll need away from the office. Here’s how to get started.

Be honest with yourself
Sometimes the best support network starts with yourself. Is psoriasis hard to live with? Of course it is. Living with any chronic disease makes life more challenging. It’s okay to admit that so you can begin to accept it. Then, you can start building a support system to help you manage it.

Invite your friends and family to learn about the disease
It can feel overwhelming to learn everything you need to know about psoriasis. Spread out the workload by inviting family members or friends to help you research it. Then share what you learn over lunch or coffee in a comfortable environment. This lessens then burden on you to learn “everything” and ensures those closest to you understand your condition and experience too.

Day recommends that a family member or friend goes with you to medical appointments as well. That person can help take notes and be sure you’ve asked all questions you have. “It always helps to have a patient advocate at visits, and family members can be very helpful in this regard,” Day said.

Connect with a patient advocacy organization
The National Psoriasis Foundation (NPF) provides a wealth of resources to make managing your condition easier. Their website includes excellent information about the condition itself and treatments, and their Patient Navigation Center is a free, confidential “personalized support center for people impacted by psoriatic disease.”

The Patient Navigation Center can help you find healthcare providers, learn about treatments, prepare for appointments, find health insurance, address difficulties with insurance companies and access translation services. 

Join a support community
Life with psoriasis can feel lonely, but plenty of folks are living with the condition. Daily Strength has a psoriasis support group approaching 300 members, for example.

Multiple Facebook groups also provide support for those living with psoriasis. Some even focus specifically on guttate psoriasis or psoriatic arthritis.

TalkPsoriasis is an online support community sponsored by the NPF that has more than 140,000 members. After creating an account, you can search forums by topics or start your own. The NPF’s One to One program will also match you up with a volunteer living with psoriasis who is trained to provide one-on-one support and information.

Children and teens living with psoriasis or psoriatic arthritis can check out NPF’s special section just for them.

Join a meditation or activity group
Stress is a common trigger for psoriasis flare-ups, and then the flare-up itself causes even more stress. Mindfulness meditation and physical activity are both very effective stress reducers. Joining a group makes it even easier to stick with a new meditation or exercise plan.

You don’t have to join a gym either. The best physical activity is whatever you enjoy and will keep doing. Maybe it’s joining a local volleyball team, trying yoga or tai chi, starting a walking group or playing with your kids at the playground. Maybe it’s starting your dream garden or taking ballroom dance lessons with your partner. Just make it fun!

Consider finding a therapist or counselor
People living with psoriasis are at higher risk for depression. A 2014 review of nearly 100 medical studies published in the Journal of Investigative Dermatology found that people with psoriasis are more than 1.5 times as likely to develop depression than those without it. At least 1 in 10 people with psoriasis has clinical depression, and 1 in 5 experiences depression symptoms. 

Common symptoms include fatigue, sleeping problems, the inability to enjoy things, difficulty concentrating and having less energy. Depression is a real medical condition that requires treatment. An online screening test can help you recognize if you might have it, but only a health professional can diagnose it. Contact your insurance company or the NPF to find a provider.

Ensure your intimate partner is supportive
Living with psoriasis might make intimacy feel more complicated sometimes, even if it’s because of self-consciousness. If you’re married or in a long-term relationship, be open with your partner about what living with psoriasis means for you and ways they can support you. If you’re dating, you will need to decide when it’s appropriate to talk to your partner. The sooner you discuss it, the sooner you will learn if they can offer the understanding and support you need.

Establish open communication with your employer as needed
Managing psoriasis often involves juggling multiple medical appointments, such as medication follow-ups, phototherapy treatments or testing. Balancing work with your psoriasis management becomes easier when your supervisor knows what to expect. Plan a meeting with your boss when both of your stress levels aren’t high. Explain how your condition might influence your work, such as appointments you may have during work hours or accommodations you may use. For example, setting up an ergonomic work space can help manage pain, and other strategies can make your job easier, safer or more comfortable.

Managing a chronic condition can sometimes take a toll. Check in with yourself now and then to be sure you’re doing okay. If you aren’t, stress can worsen your psoriasis. Ask for help, whether it’s from a friend, a family member, a healthcare provider or someone else. The more support you have, the more easily you can successfully manage your psoriasis.

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