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 Hillary Norton, MD
Thursday, May 04, 2017
Rheumatologist Dr. Hillary Norton talks about living with her own AS with Dan Reynolds, the lead singer from Grammy award winning rock band, Imagine Dragons.
This AS Life Live! is a series that brings together people with ankylosing spondylitis (AS) to share stories, help inspire each other, and live their best lives.
Dan: Welcome to the next episode of This AS Life Live!, which brings together patients of AS like myself to share our stories and help inspire each other to live our best lives. Today I am meeting with Dr. Hillary Norton, who’s a rheumatologist that also has AS. Let’s head on up.
Dr. Norton: Hi Dan.
Dan: Hey, Dr. Norton.
Dr. Norton: Great to meet you.
Dan: Great to meet you too.
Dr. Norton: Come on back.
Dan: Alright. Thank you. Thanks for having me. I have a million questions for you, but I think first and foremost I have to say, you are the first person that I’ve met who is both a doctor and has AS. Which to me is super intriguing, because it kind of gives you two perspectives.
Dr. Norton: Right.
Dan: So I guess my first question, before we get into that is, tell me how you were diagnosed, when, how the process kind of occurred.
Dr. Norton: Well, like many AS patients, I started having pain in my late twenties, low-back pain at night. I would have a lot of trouble turning in bed. And these episodes kind of came and went. I always figured it was something I did in my workout. So, I…
Dan: That you tweaked kind of something.
Dr. Norton: Yeah, and after a while I thought, you know, I don’t know, I have some back issue, and maybe I was riding my bike, or did something at the gym, and just kind of ignored it, like most people in their twenties would. And it would kind of come and go, so it made it easier to ignore.
Dan: I think actually that’s pretty common that somebody, I mean, you would know better than me, but that somebody thinks, well, you know. ‘Cause for me, I was like, I ran a lot, and I remember, you know, thinking I had tweaked something, like I was running up a hill, and I must have tweaked something.
Dan: Because you’re in your twenties and you’re healthy, and it couldn’t be like…
Dr. Norton: Exactly. It couldn’t be a chronic disease. And so then, you know, those episodes got worse. By the time I was in medical school, the night pain got bad enough to be a little scary. And we don’t get much rheumatology in medical school at all. So, like every other patient, I’d be sitting up at night, looking on the Internet. And every time I got to the sections about chronic disease and genetic predisposition, I would skip the whole thing, because I would think, well, I don’t have a chronic disease.
Dan: Right, right.
Dr. Norton: Yeah, so I had had back pain for about ten years. Um, and then I developed eye inflammation, which was a red flag and brought me to the attention of a rheumatologist. So that led to my diagnosis. And then it was still several years before I was treated.
Dan: So you were already getting into medicine before you were diagnosed. It wasn’t like you were diagnosed and then that made you think, oh, you know what, I want to learn more about this and get into rheumatology.
Dan: It was, you were kind of going through the process of both, which is crazy to me that you already had this interest in, you know, rheumatology, and then…
Dr. Norton: Well, I think that the diagnosis really solidified the rheumatology route for me.
Dan: Okay, so you weren’t sure about rheumatology then.
Dan: Okay, that makes more sense, because I was like that is really…a strange coincidence.
Dr. Norton: Right, that was pretty crazy. No, it was on my radar, because rheumatology is a great specialty, but I was actually diagnosed in my, at the beginning of my intern year, so I had just graduated from medical school. And so that, that whole process really increased my interest in rheumatology, of course.
Dan: How… Do you think that because you have AS you kind of have a different look and you can kind of give them a different perspective and have more compassion for, for that? And, you know, what do you say to them in that moment, I guess?
Dr. Norton: Sure, well, I mean, you can’t learn this from a textbook, right? I mean, absolutely. I think that for the patients it’s important for them to know that I really get what they’re going through. So I think that that initial discussion, if they weren’t suspecting that they had a chronic disease, um, is pretty intense. So we do, we spend some time talking about, about things that they can do, um, how they can get support, um, what good resources are. Um, a lot of patients suspect that they have it already, and some of them don’t. So it’s different with every patient. But I think that, I think it’s huge. So I do share with them that I have it, and I think that helps.
Dan: So, when a new patient comes in, what’s kind of the typical procedure? What are some of the questions you ask them, or discussions you have with them when they come in?
Dr. Norton: So I start out by asking if there’s a family history of back pain. Um, and then a big thing is what makes the pain worse and what makes it better, so is it better during the day or the night? Does exercise help? How long have they had back pain?
Dan: So if someone comes in and they have ankylosing spondylitis, what are some tips that you have for them, just general kind of tips?
Dr. Norton: So staying active is the biggest one. And then finding the diet that works for you. And that’s different for everybody. There’s no one particular diet for AS. Um, not smoking, because there is a correlation between worsening in AS and smoking.
Dan: Wow. So another question I have for you is, and this is a question I ask everybody, is, if you, if you could say one word to your AS, what would that be? And it could be two words, maybe, because some people have said two words. But, you know, one or two words…
Dr. Norton: So I have two phrases. Um, I think most of the time it would be thank you. But some days it would be back off.
Dan: Explain to me why you say thank you. I’m curious what your take is on that.
Dr. Norton: Well, I think that suffering can cause us to go deep. It can cause us to go to a place in life that we might not otherwise go. So I think we’ve dealt with this battle, we’ve, um, we’ve had to look at things in a different way.
Dan: Wow. Yeah, I feel like it, for me at least, has really changed my perspective on life, both, you know, in having more compassion for people with, uh, diseases, or even just pain. I think you feel a lot more compassion for people and what they’re going through. You know, I feel like there are many times when I was young where somebody would complain about pain, and I would think, you know, toughen up, or something. Because that’s, you know, how, what my brothers would say to me, you know, toughen up. And so now, I see it differently, which is, you know, just more compassion, which I feel like everybody could use. So….
Dr. Norton: I agree. And this is a hidden disease, so I think it teaches us not to assume anything about what other people are going through.
Dan: Sure. So why ‘back off’? [laughter] I think I know the answer to that, but… I’ll ask anyway.
Dr. Norton: Um, yeah, on those tough days, um, you know, when, when we’re having pain, when it’s not controlled. Some, some days I just want to tell it that that’s enough.
Dan: Right. I completely agree with that. It’s not always thank you for me. So what kind of advice would you give, or what additional knowledge do you wish that the kind of medical world had with AS?
Dr. Norton: Just that it’s not just back pain. That minimizes it, and I don’t think that we have a good description of what AS really feels like. But it’s so much more than back pain.
Dan: What does living an AS-adjusted life mean to you?
Dr. Norton: Well, I think it means that we pay a bigger price if we don’t listen to our bodies and do what we need to do. I think that everybody pays a price if we don’t do that. But I think that if we’re not listening to ourselves and what we need to do, it can be bad. We’re busy people, and I think that finding out how to stay healthy within the context of a busy life is what an AS-adjusted life is.
Dan: Well, Dr. Norton, it has been a sheer pleasure. Thank you so much for having me.
Dr. Norton: Thank you, Dan.
Dan: I hope to see you again soon.
Dr. Norton: Yes.
Dan: Alright, I’m gonna head out to meet with someone else who has AS to hear their story. And in the meantime, you can go to ThisASLife.com for more information. I’ll see you next time.
Other posts by Hillary Norton, MD
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