Psoriatic Arthritis Support: Welcome to My Tribe
When my son was first diagnosed with psoriasis in 2002, the number of online communities for patients and caregivers were minimal. We didn’t have smartphones. We weren’t on social media. As parents, we were navigating this disease on our own. The following year, when he was diagnosed with psoriatic arthritis, we felt even more lost.
Thankfully today, because of Health Union, the National Psoriasis Foundation, and other reputable online communities, patients with psoriasis and psoriatic arthritis don’t need to feel isolated and alone.
The growth of psoriatic arthritis support
With the rise of social media, it’s easier than ever to connect with patients across the globe, and my number of connections grows daily. This isn’t because I’m a superhero. It isn’t because I have all of the answers. That’s far from true. I rarely have any answers.
I think these connections continue to grow because we are anxious to find support, education and someone else who says, “I get it.” If this is you, then welcome to my tribe.
Who’s in the psoriatic arthritis tribe?
My tribe is big. My tribe is diverse. My tribe is inclusive. In fact, it’s not even my tribe. It’s our tribe. Do you have psoriasis? Do you have psoriatic arthritis? Welcome to our tribe. It doesn’t matter if your disease is severe or very mild, we are still connected and you can lean on us.
We don’t judge. We aren’t condescending. We’re just a group of people connected by our disease, and we’re all trying to figure it out the best we can. And if even one person feels more at ease, then our tribe is a success.
Moms and dads
Are you a parent of a child with psoriatic disease? Welcome to our tribe. Parenting is not science. There is no one way to do it, but so many think they are experts.
Throw chronic illness into the mix and you get a long list of do’s and don’ts by just about everyone who has never walked in your shoes. Don’t give up. We get it and are here for you.
Feel like you’re caught in the middle? You’ve been the kid with chronic disease, and now you’re in college or at your first “real” job, and you’re not sure what comes next. It’s hard enough navigating your 20s and figuring out what you want to do and where you want to go. Psoriasis and psoriatic arthritis can make that even more difficult.
I’m no spring chicken, but lucky for you, there are others in our tribe who are, and I guarantee they are great listeners, as is this old lady. Welcome to our tribe.
Wondering where you fit in? You’re the ones that make it all stick. You’re the ones who provide laughter on a rough day. You’re the ones who give us a reality check when we’re down. You’re the ones who celebrate our victories with us. You’re always welcome in our tribe.
You are the ones to help manage our care. You are the ones who fight along with us to find the right treatment to put us in remission. You are the ones who educate us about what to expect, what is normal and what is concerning. You are the ones to run the labs, and you are the ones who call us out when we’re not complying with treatment. You are important to our tribe.
You are the ones who make the laws to better our lives. You are the ones who make access to care easier. Whether in Washington or in our hometowns, you can make a difference by listening to us and deciding to make a change. You are welcome in our tribe.
Shout out to the unsung heroes of psoriatic arthritis
With any tribe, there are unsung heroes. For me, that is my son, my husband, my best friend, my mom, and my aunt – in no particular order because they are all amazing. I could never thank them enough for being in my tribe and providing all of the support and encouragement I need. I love them for what they do and what they don’t do.
Do you have an unsung hero? Celebrate that person and share with us your story.
Do you have any questions about psoriatic arthritis?
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