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 Liz Maines
Monday, September 17, 2018
Imagine Dragons lead singer Dan Reynolds discusses living with spondylitis with licensed psychologist Liz Maines. Part 2 with mental health advocate Felicia coming soon!
Dan: Welcome to This AS Life Live, which brings together people with AS to share our stories and inspire each other to live our best lives. Today, I’m sitting down with Liz Maines who is a licensed psychologist with AS and Felecia, a mental health peer advocate who also lives with AS, to talk about something that many of us experience- emotional struggle because of AS. They will both share insights on how to address these feelings. Let’s go meet them. Dan: Liz, thank you for joining me. Tell me a little bit about yourself.
Liz: So, I'm a clinical psychologist and I'm from Santa Fe, New Mexico and I've been a clinician for about 20 years now. So I actually see people who have chronic illness or terminal illness.
Dan: So, when was the first time that you felt any symptoms of AS?
Liz: You know, it's funny, when you get diagnosed you really reflect back and you're able to see some of those moments that were undiagnosed. I would say the first time that I remember being in the bathtub in the hot water, because my back hurt so badly my lower sacroiliac area.
Liz: And, so, 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?" I couldn't understand it, it just went white noise from the stress
Dan: Because you're having to process it, yeah.
Liz: of hearing it and feeling overwhelmed. Yeah.
Dan: What changes did it make to your life? Take me through that.
Liz: Anytime you deal with loss, and especially when we're young and we're at the prime of our life, and we're facing loss, loss of physical ability, loss of energy, changes, loss in relationships, loss in jobs.
Liz: Some people have to actually change careers. So there's a lot to deal with and a lot to grasp. And so, the best way I can describe it is, is moving through a grieving process because of the loss. So, it begins with denial. I was in denial about being diagnosed.
Liz: So, it's a process and coming to terms with the process emotionally, moving through depression and acceptance.
Liz: We have no control over when we're going to have a flare.
Liz: 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, you're young.
Dan: So, my question for you is, as being a therapist, you're having these people come in all the time, some of which have AS. How do you help them cope?
Liz: It's an assessment to see where people are in terms of accepting the disease, so that's the beginning. But, I would say that depending on where they are within their disease process I would make different recommendations, but, overall I would say don't isolate. You know, reach out, because you can't be alone with this.
Liz: Stay active, as much as you can within your disease process. Whether that's, you know, parking a little further away from the door of the grocery store,
Liz: and walking a little further, but staying active not only helps with the disease but it also helps with depression.
Liz: I would say a really essential thing with AS is to have a good medical team or rheumatologist. You really, really need to be able to have someone who understands this disease and is able to guide you, because the diversity of experiences and symptoms is incredible with AS.
Dan: So, what advice do you give in regards to friends and family around someone who has AS?
Liz: Oftentimes family members feel left out, and left out of the process. So, I would say that communication is number one, to be able to talk to your spouse, not protect your spouse
Liz: from what it is you're going through, but be open about it and share your feelings.
Dan: So, 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? Am I in denial? Am I depressed? Where am I and what would help me feel better and help me take care of myself?”
Dan: Thank you for meeting with me. Thank you for inspiring me.
Dan: 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.
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