Ways to Get Involved in the Psoriasis Community
Last updated: February 2022
All of us, not only want relief but find ourselves on the journey to self-acceptance as well. Prioritizing mental health and practicing gratitude sound so good in theory but those who believe that haven't felt the burning intense itch and own the visible plaques that come with psoriasis.
So, what can we do? We can advocate. We can get involved. We can help others feel less alone by being brave enough to share. We can get involved with others who live with this chronic and detrimental skin condition.
Let's break down a few ways to get involved...
Just like there are many different treatment options, there are many ways to get involved within advocacy and supporting the psoriatic disease community. Both are a different type of overwhelming.
Sharing your own experience at your own comfort level is possible. I break down a few ways you can get involved below.
Check out the National Psoriasis Foundation
The National Psoriasis Foundation (NPF) is a wonderful place to start if you want to find ways to get involved with the psoriasis community. Personally, I started with them 5 years ago when I attended my first volunteer conference in Washington D.C.
Since then I have worked very closely with them on advocating for patients with psoriasis. Here are a couple of programs the NPF offers.
The One-to-One Mentor Program. Although it’s designed is for newly diagnosed patients, anyone who is having a hard time with psoriasis can sign up and find a mentor. This program was the first one I signed up for. I had the opportunity to meet a wonderful mentor who helped me cope with my disease when I was having a hard time. You can also sign up to become a mentor.
Join Team NPF. The NPF has several walks and cycling events across the United States to raise money for research, advocacy, and support programs. I’ve been involved with the walk myself and helped raise over $2,000! It’s a great way to get involved, build relationships with doctors, and meet others with the disease.
Participate in an online support group
The traditional ways of support groups seem to be a thing of the past. In addition to the community on this site, NPF has an online community, an online community is a great place to meet people online with psoriasis!
It’s a safe place to ask questions, share fears, and give advice. There are over 80,000 psoriasis patients on the site, so you are bound to find someone in your area! I met two people where I live and have spent time with them! It’s a really great way to not feel alone with your disease and find people who understand you.
Get in the conversation
Years ago before social media, it was hard to find others suffering from psoriasis. Many people hid and had no outlet to safely talk about it, now with online support groups and social media, hiding has become a thing of the past!
Here are some ways you can get involved with the psoriasis community via social media.
Twitter. Using hashtags is a great way to connect to others talking about the disease! The most popular hashtags are #Psoriasis #PsA #Chroniclife #Chronicillness #Spoonies #PsoriasisAwareness. Different organizations also provide twitter chats where participants use a specific hashtag to participate, which usually last 30 mins to an hour. Follow PlaquePsoriasis.com on Twitter.
Facebook. This site is not only a great way to connect with friends and family but also others with specific interests. If you put “psoriasis” in the search box on the site a variety of groups for psoriasis will pop up. I am currently a member of a popular Facebook group “Overcoming Psoriasis.” It’s a safe place to ask questions and share pictures without being judged. Join PlaquePsoriasis.com on Facebook.
Find ways that work for you
There are so many aspects of managing life with psoriasis that can feel unpredictable and out of our control. Sometimes, the only way to take care of our condition is to redefine our thoughts and feelings about it.
I hope you can find a way to get involved and make a difference at your own comfort level. Just as you want to bring comfort and support to others, make sure you're taking care of yourself in the meantime.
Does your psoriasis management change with the seasons?