This AS Life Live! is the first interactive online talk show for people with ankylosing spondylitis (AS) by people with AS.
The program is a collaboration between the Spondylitis Association of America, Novartis Pharmaceuticals Corporation, and Dan Reynolds.
The goal of the series, hosted by Dan Reynolds, AS patient and lead singer of the Grammy award-winning rock band Imagine Dragons, is to inspire and encourage people to live their best lives with AS and to raise awareness of AS. Imagine Dragons has a large USA and international fan base with extensive tours, TV appearances, awards and hits including Radioactive, Demons, Believer and Thunder.
With just the first 3 video interviews released in 2017, This AS Life Live! has reached over 500 million people on social media, and through print, broadcast, and online news coverage.
"Each person's story is unique. As we release more and more of these interviews, I hope that everyone living with AS will find something they can relate to and find value in watching and sharing. Dan has truly been wonderful throughout the series. He is friendly, thoughtful, empathetic, candid, lighthearted, just real." Rich Howard
SAA receives no government funding and relies on the
generous donations from individuals to create and maintain the programs and
services aimed at improving the futures of the 2.7 million Americans affected
By Felecia Campbell
Monday, September 17, 2018
Imagine Dragons lead singer Dan Reynolds discusses living with spondylitis with mental health advocate Felecia Campbell and licensed psychologist Liz Maines.
Liz: When I got the diagnosis I would say that, you know, initially I was a little bit relieved, but I didn't know what ...I was like, "What is ankylosing spondylitis?"
Dan: To someone who was just diagnosed with AS, your recommendation right off the bat is?
Liz: Do a self-scan and say, "What is it that I need right now?” We have no control over being fatigued one day and then the next day you're fine.
Liz: And I think that's confusing to people who love you, or people that you work with, or that you're around, because you look normal, you look healthy.
Dan: Well Felecia, thanks for taking the time to come to Las Vegas…
Dan: …and meet with me for a little bit to talk about ankylosing spondylitis. When was the first time you felt any sort of pain associated to AS?
Felecia: I think a lot of us who experience pain are conditioned to think that it's normal growing up. So, it's kinda interesting to look back at now, but I can remember the first time I couldn't get out of bed. You know, I was 12, 13 years old and had such debilitating lumbar pain, and I was such an active person.
Dan: How do you manage, you know, being a mental health advocate while also juggling and prioritizing giving time to Felecia, you know what I mean? Like…
Felecia: When I was working as a peer support advocate in, you know, my job in that role was to share my lived experience with, you know, my mental, my emotional health in a capacity that was focused on navigating tools and resources, if that's something someone wanted. Working one on one with someone, meeting them where they're at. And I think that's the key to really getting support, is meeting someone where they're at.
Liz: How did you decide to go to a therapist? How did you know to go get some help?
Felecia: For me I knew that I had to, I had to vent. I had to complain. We have to, right?
Dan: Yeah. It has to go somewhere, right?
Felecia: You have to get rid of it.
Dan: If you're just going to hold it in, you have to get rid of it, so sometimes it happens to the people you love the most.
Felecia: And some days you just need to be sitting in your pity.
Felecia: You need that balance, and at least for me.
Felecia: And, um, those are days when I would reach out for support. And, you know, I have, like many others, coexisting illnesses.
Felecia: I looked for a therapist who specialized in illness, I was like, "I know this is what I need." It's not just about venting. You know, I've had this experience since I was a child where I'm told that my pain is essentially-- It's not that it's not real, it's not that, like, pain has a psychological effect and I can recognize that, but I also need to know that, like, the pain is a tangible thing that can be worked and processed with. And so I found someone who specialized in chronic, degenerative, fatal diseases, and I'm still with her.
Liz: I think that's a really critical comment, is that whenever you look for a psychologist or a mental health professional, it has to be someone you click with because you're going to spend a lot of time with them.
Felecia: It's really brave to be vulnerable in this world.
Felecia: It really is. And to seek help, to have resources and support available to seek help, that's a good foundation. But to be able to say like, "I want to do something about this because I don't deserve to live this way."
Dan: What are two to three tips you would give to someone like us who's searching for a strong mental place?
Liz: I would say that to continue to follow your bliss. I mean you didn't stop doing what you loved, which is music, art, helping people. Continue to follow your bliss and do what you want to do.
Liz: Also, finding ways to center yourself. For some people that's thinking about a positive thing for that morning when you wake up, and say, "I'm really, really grateful that today I can get out of bed and today my goal is, for me it's to walk at lunch.”
Felecia: I really loved what you said about following your bliss. Those moments of joy, like I call myself a joy collector, because I do revisit those moments in times of distress and I'm like, "Oh yeah, this is what I still have. This is what I can do."
Dan: Are there resources that you would recommend to someone when they come in?
Liz: First place I would refer people to is the Spondylitis Association. And part of the reason is that that's the best resource for information, not only for the patient, but referrals to physicians, and also for family members to read about the disease and understand what's happening to their spouse. And, the Spondylitis Association also has support groups in many states.
Liz: There are lots of places that can be safe places that we can share our experiences and get support. It may not always be a therapist, it may be peer support, it may be a church group, it may be a grief group. But there are resources out there that are right for just about anyone, but you just have to find the right fit.
Dan: Well, I just want to say thank you to both of you for being powerful parts of this community that so badly needs help and needs a light shone down upon it.
All: One, two, three, stand tall.
Dan: I hope you find the tips from Liz and Felecia as helpful as I did. As always, I encourage you to visit ThisASLife.com for other episodes and share them on social media. Check spondylitis.org for support groups and I will see you next time.
Check out Felecia's discography: https://feleciaandthedinosaur.bandcamp.com/
See Felecia on The Faces of Ankylosing Spondylitis: https://thefacesofankylosingspondylitis.com/a-s-face-0949-felecia-campbell/
Other posts by Felecia Campbell
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