Importance of Online and In-Person Support for Psoriatic Arthritis

By Diane T

2 min read

Living with psoriatic arthritis (PsA) has been a journey, and one thing that made a huge difference was the support I found from different communities.

When I was diagnosed with PsA, I felt isolated and was told I was lazy many times. However, finding online support groups and individuals has changed my experience by providing a sense of belonging and encouragement.

Finding strength and support through online communities

When I was diagnosed, I felt that my world was spinning. I had always felt that the pain and fatigue I was having was too much to endure.

It was hard to imagine this new reality. I knew I had to find a way to face it both physically and emotionally.

I went online to find answers and support. Online communities were my first lifeline.

I joined several support groups and specific forums for people with PsA. These platforms quickly became invaluable for information and comfort. Reading other people's stories and realizing that I wasn't alone in this fight was a great relief.

Gaining insight and connection

Many members shared their experiences, treatment options, and strategies, which have greatly helped me manage my symptoms. One of the best parts of this online community is being connected to people everywhere. They shared information about new medicines, alternative therapies, and lifestyles that have not been thought about.

Anonymous online interactions also made it easier to express my fears and frustrations without feeling judged. This was so important to my mental health because it gave me a place to vent and seek advice. Even though online support was great, I soon realized that I needed more face-to-face interaction.

This is how I found our community. Soon, I got invited to a conference and eventually was asked to write articles and moderate. This helped me find my voice and become a patient advocate.

Over these past few years I have been working with Health Union, I have met other people who have experienced similar problems as I have. We have been instantly bonding because we have all understood each other. We talk about our everyday struggles, celebrate small wins, and encourage each other.

This community reminded me that I was not alone in the fight against PsA. Personal support has been a unique advantage. You can see and interact with people who understand what it feels like to be part of a strong community. They also organized social events.

My family and friends have also played a huge role in supporting me. Their education on this illness has been crucial to helping them understand my limitations and needs. They supported me in various ways, such as coming to doctor's appointments with me or helping with my work on hard days, which made a significant difference.

In general, public support was the cornerstone of my journey with PsA. The combination of online support and personal offered awareness and resources of different networks.

These support groups not only helped me to manage my physical symptoms, but they were also very important to my spiritual and emotional well-being. If you live with PsA, I invite you to look for any support systems.

We are all in this together.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Mary Lynn Member
This is an important topic. It's especially important the newly diagnosed. I have a very supportive husband - almost too supportive at times, like I should be wrapped in bubble wrap and perched in a corner 😀 - and good support from other family members and friends, but when I joined an in-person group I felt understood. They spoke my language of steroids and biologics and fatigue and pain. You can't truly know the impact of an autoimmune arthritis unless you have one. In a forum like this, I don't sound nutty or crazy when I am having a tough time. I don't sound like a baby when I struggle with medication side effects and swollen joints. You get the idea. Thanks for writing this, Diane. And thanks to all of the moderators and members here who offer us a safe place to land.
1. ClairG Moderator & Contributor
 <inline-mention username="Mary Lynn" user-id="4513411"/> , We are so blessed to have you as part of our community, May we always be a soft and safe landing for you and all our members. I found my peace in an online community too, and knowing that we are not alone and that there are people who truly understand this, and get what we are experiencing is priceless. How are you managing today? - Clair ( Team Member) 
2. Diane T Moderator & Contributor
 Hello <inline-mention username="ClairG" user-id="3280001"/> and <inline-mention username="Mary Lynn" user-id="4513411"/> , You both are awesome and bring so much value to the community. It's so hard for people to understand what we go through. If I had a penny for every time I was judged, I would be a millionaire. I also found my voice in an online community and realized I was no longer alone. Thank you both for the guidance and wisdom that you share. I have had psoriatic disease for 61 years and there are still times I still shed tears, but I know at the end of the day that I'm no longer alone and have a community I can come to. Hugs to you both!!
Mary Lynn Member
<inline-mention username="ClairG" user-id="3280001"/> and <inline-mention username="Diane T" user-id="3306420"/> , I look forward to visiting this site. There is comradery and great tips along with encouragement and humor. <inline-mention username="Diane T" user-id="3306420"/> , I haven't lived with this disease as long as you have. Gosh, I'm sorry for the years you've had to put in. But your comment that you still shed tears helped me today. I'm struggling with an ankle and shoulder. Tears are pretty darn close to the surface as I fight through my daily routine and necessary household chores. I tell myself that I should know how to do this. I have experience. But pain has a way of grinding a person down. My rheumatologist advised a load/taper of steroids so I should feel better in a few days. I just have to be patient and hang in there!
1. Mary Lynn Member
 <inline-mention username="Diane T" user-id="3306420"/> , oh my, another diagnosis. I am truly sorry to hear about the chronic kidney disease. Sometimes all you can do is laugh at the absurdity of a situation. Doctors tell us to take this and that and the next new and improved thing, but we don't know what the fall out will be down the line. You take good care of you! I insist 😀
2. Diane T Moderator & Contributor
 Hello <inline-mention username="Mary Lynn" user-id="4513411"/> , thank you so much, my friend. You do the same.
kpalmer9 Member
Today is one of those days that the importance of having this place to come to, makes all the difference. Here's the situation...I'm coming off a devastating flare from the beginning of this year. On a new biologic Cosentyx for about 2-3 months. I'm starting to see and feel improvements, so I'm cautiously optimistic. I noticed just a few days before my monthly dose that my symptoms were on the rise. A few days after the dose, symptoms began to subside again. Yesterday, I got my 2nd shingrix shot. It hit about 7 hours later. Today, I'm coming around a bit. No, I do not like abusing myself, my rheumy insisted I get them. I complied, or else he would not prescribe the Cosentyx. Anyway, the shot really set me back yesterday and today, like a self-induced flare! Next Thursday will be my next Cosentyx injection, and I wanted to see if my PsA symptoms start to return a few days before, then calming, indicating possibly the need for a higher dose. I have an appointment with my primary in two weeks but not until October 24th for the Rheumatologist! He doesn't do urgent appointments, or, put you on a cancellation list. I had plans yesterday and today to do more physically active things outside in the yard/garden. PsA takes the symptoms you have along with the vaccine side effects and multiplies it all many times over, or so it seems. This is where I come to collect my thoughts and be centered when I get thrown off the surf board, on top of that very huge wave of PsA disease management, during a hurricane of things trying to knock me off that impossible balance of flare and remission! Where I come to get back up, get on the board, paddle back out, patiently wait to ride another wave in to shore and maybe have a good long ride for awhile. That wasn't too obtuse, was it? I liked it! So, I hope others can relate and hopefully smile or laugh at my back and forth venting with myself. 'Cuz when the in-person support ain't there, this place is an absolute cure for the incurable! Thank you! Thank you! Thank you! I would stand up and shout it out from the heavens if it raised the awareness and helped others. My voice is sore. Thankfully we have the internet. So helpful.
1. Diane T Moderator & Contributor
 Hello <inline-mention username="kpalmer9" user-id="9749102"/> , thank you so much for the kind words. It means a lot to this community. I kept saying for years, why doesn't anyone understand what I am saying? You had me dying laughing about getting back on the board. I read it 3 times. I am still giggling. When I first came to this community, I knew I would love it. People let me speak, and then someone said, you have to let your voice be heard. I was hooked. I have had psoriatic disease for 61 years and I knew I wanted to raise awareness and help others. I came to the right place. I hope your rheumatologist will find something that helps you. It's too bad you have to wait a few months to see him. My longest was a year's wait. Sad isn't it. Please stop by anytime, we are always here. So hope your voice gets better too. How long have you been taking biologics? We hope to hear more from you. Diane (Team Member)
kpalmer9 Member
I wanted to add that I had initially stayed away from forums in general due to the lack of specificity within topics. I felt that I didn't want to fill up on things that weren't very factual of my disease or get into a pity party over it. After trusting my medical providers and learning about my condition and test results on line, I needed more help for myself and to advocate things that were not being heard. I get the things I need here, that are not in great supply elsewhere. It has been a catalyst for my recovery of this latest "experience" with PsA. Peace, Love to you all.
1. ClairG Moderator & Contributor
 <inline-mention username="kpalmer9" user-id="9749102"/> Ah I loved this message from you, Thank you so much It brings me such joy when members draw from our site what we are here for. We love hearing from each and every one of you. I personally love seeing perspectives on what we all go through together, and yet so individually. We are here for you every step of the way. I hope you are having an easy day today. Warmly, Clair ( Team Member)