The support of friends, family, and your medical team is vitally important when you have psoriatic arthritis. But a connection with others who also live with the disease raises your PsA care to another level. When you’re in touch with people who know what it’s like firsthand to deal with the disease, it gives you a safe place for mutual understanding, personal advice, empathy, and real-world tools for living your best life with PsA.
How Community Helps
The day-to-day management of your disease can cause an emotional toll. Around one-third of people with PsA also deal with depression and anxiety. This is closely linked with the level of pain you have with your disease. And having mental health problems can worsen PsA symptoms.
Anxiety not only creates feelings of tension, worry, and irritability, it can also negatively affect health by raising blood pressure, for example. Depression saps energy and keeps you from enjoying daily activities. You may also have trouble sleeping, which can create a negative loop of stress and worsening symptoms.
Studies have shown that people with chronic disease such as PsA who have a strong social support system have a better quality of life than those without support. Support from others can reduce the psychological and physical impact of stress on your system. Science shows that a support network can lower your blood pressure and boost your immune system.
But research goes on to show that talking specifically to other people with PsA helps you further deal with the emotional impact of the disease and feel more reassured and connected. Here’s how to find the network you need.
How to Find Others With PsA
It’s common to feel isolated when you have PsA. Symptoms of your disease can keep you from doing many things that others do. You may find your world growing smaller as your symptoms loom larger. But spending intentional time reaching out to people and organizations that can help will go a long way toward boosting your emotional and physical health.
Start small. Maybe you know someone in your immediate community who also has PsA. Consider sending a message on social media or asking a mutual friend for an introduction. If they’re not a social fit for you, they may have suggestions for groups or other people you can connect with.
Focus on online outlets. If the thought of a face-to-face meetup feels daunting, turn to the internet for PsA support from the comfort of your own home. Many larger psoriasis and arthritis organizations have online forums or even live chat options, and many PsA-focused groups exist on social media. Online connection can provide just as much comfort without the anxiety of figuring out in-person logistics.
Ask your doctor for support avenues. Stumped on where to begin? Talk to your doctor. They may know of local or national resources you can tap into for personalized support.
Research groups. Although it’s good to have support, you want to make sure the support you find is the right fit for you. You may have to look at a few groups before finding one that works best. Tips for searching out your support include:
- Look for groups specifically focused on PsA.
- Explore the atmosphere of the group and be sure there’s a feeling of trust and support.
- Check out how many members there are and how active they are in the group.
- See if you can connect with a range of members, both long-term and new, so you can ask how they enjoy it.
Kinds of Support
The type of structure you need for your PsA well-being will be unique to you. Some people prefer large groups, while others need a more intimate setting with one person or a just a few people. There’s no right way to connect. You can explore your options.
Peer-to-peer. The National Psoriasis Foundation (NPF) offers a program called One to One that connects you with someone who’s been where you are in your PsA journey. They match you with an appropriate mentor who can listen, give advice, and be a friend to walk alongside you.
Passive listening. Blogs, podcasts, and other resources written and maintained by people who deal with PsA personally can offer one level of comfort for your own disease journey. Often, simply reading someone else’s diagnosis and treatment journey with PsA can be a source of reassurance that you’re not alone. Global Healthy Living Foundation’s CreakyJoints website offers a monthly, patient-driven chat on X under the hashtag #creakychats, as well as personal stories of people living with arthritis.
Online communities. The Arthritis Foundation Live Yes! Psoriatic Connect group is an online source for virtual hangouts, personal connections with others with PsA, and forum discussions all about living with the disease. NPF offers the world’s largest online community of people living with psoriasis and PsA.
In-person options. Traditional, in-person support groups give you a more intimate, interpersonal experience. Typically support groups gather in a space and talk together about how each person is dealing with their PsA. Some groups have additional tools such as nutritionists or doctors who provide education alongside the personal connection. Usually there are options for social events such as picnics or other fun outings, too.
Ask your doctor for in-person support group suggestions, or check out the NPF’s Events In Your Area webpage for more information or to take part in one of their community conferences.
Show Sources
Photo Credit: DigitalVision/Getty Images
SOURCES:
Rheumatology and Therapy: “Depression in Psoriatic Arthritis: Dimensional Aspects and Link with Systemic Inflammation.”
Arthritis Foundation: “Arthritis and Mental Health,” “Build a Support System to Fight Arthritis,” “Social Support for Psoriatic Arthritis.”
National Psoriasis Foundation: “Peer Connections.”
