Traveling the World with RA and AS: James Hollens’ Story

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Summary:

In episode 141 of The Arthritis Life Podcast, James opens up about his decision to publicly share his rheumatoid arthritis journey, highlighting the vulnerability that comes with talking about chronic illness online. He reflects on the challenges of being a male figure in a largely female-dominated chronic illness community, and how it has shaped his experience. Cheryl and James touch on the emotional ups and downs of living with RA, as well as practical tips for managing symptoms and staying active. Ultimately, they emphasize the importance of community and connection in navigating life with RA.

Episode at a glance:

• James’ Diagnosis Story: James shares his journey to his rheumatoid arthritis and ankylosing spondylitis diagnosis
• Traveling the World with Arthritis: James shares tips for traveling with arthritis. 
• Male Experience in Chronic Illness Community: James discusses his decision to share publicly and reflects on what it’s like being a male figure in the online chronic illness community.
• Understanding the Emotional Impact: Cheryl and James reflect on the feelings of confusion and frustration that often accompany an RA diagnosis, emphasizing the need for self-compassion and patience during this transition.
• Practical Strategies for Management: Cheryl and James share practical tips on managing symptoms, including dietary changes, incorporating gentle exercise, and utilizing mindfulness practices to help improve overall well-being.
• Building a Support Network: The episode highlights the significance of connecting with others who understand the struggles of RA, discussing how forming a community can provide encouragement and shared experiences.

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

James Hollens is a 30 year-old from Croydon, South London. Shortly after graduating from university, James was diagnosed with rheumatoid arthritis and ankylosing spondylitis. Before his diagnosis, he was teaching English in Shanghai, China, which ultimately came to an end due to his diagnosis. After returning to the UK, James decided to dedicate his time to find ways to support people in similar situations. He aims to raise awareness of young people living with chronic and arthritic conditions.

James uses his Instagram account to spread awareness and positivity to the chronic illness community. He has won the “Social Health Award” for rookie of the year. He also works alongside the charity, Versus Arthritis, and has appeared in documentaries on The Guardian newspaper’s website.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

• Links to things mentioned in episode or additional listening
  •  Versus arthritis – charity UK
  • James’ story featured on the Versus Arthritis website
  • Read James’ stories on AxialSpondylitis.Net
• Speaker links
  • Instagram @jameshollens
  • James on X (Twitter)
• Cheryl’s Arthritis Life Pages:

• Arthritis Life website 
• Youtube channel
• Instagram @arthritis_life_cheryl 
• TikTok @arthritislife
• Arthritis Life Facebook Page
• Cheryl on Twitter: @realcc 
• Arthritis Life Podcast Facebook Group

Full Episode Transcript:

Cheryl:  00:00

I’m so excited today to have someone I have loved watching them on — that sounds creepy — on social media or connecting with them on social media, never talked to in real time before today. So, welcome James Hollens to The Arthritis Life podcast!

James:  00:15

Thank you so much for having me. Likewise, I’ve enjoyed stalking you as well in the background. And it’s an honor to be here with you today, actually having a proper conversation. 

Cheryl:  00:25

Yeah, no, I’m so excited. And I just thought we’d start by you just letting us know, where do you live — also, where are you from — and what is your relationship to arthritis?

James:  00:37

So, I live and I’m from South London, England. And my relationship with arthritis, sometimes it’s a toxic one. Sometimes we get along. It’s just one of them relationships there. I’ve got rheumatoid arthritis and ankylosing spondylitis. I try and see it for the good person that it is sometimes, but sometimes it’s hard. Sometimes I’ll make little flips for it, like I try and see it as being like kind of a, like the best personal trainer and like life coach I can have, because it sort of inspires me to be as healthy and as active as I can. But other times it beats me down. And yeah, that’s when the toxicity comes out.

Cheryl:  01:21

I love that. No, I think it’s always fun to see how people interpret, you know, that question. And, yeah, I think with many of us, it’s an up and down relationship with our own bodies, you know, and what’s going on.

James:  01:33

Yeah, for sure.

Cheryl:  01:34

I love that.

James:  01:35

It’s never smooth sailing.

Cheryl:  01:36

Yeah, yeah. And, you know, you mentioned you have rheumatoid arthritis and ankylosing spondylitis. I’ll admit I didn’t even know till, like, a few years ago, maybe five years ago, that you could have both. I thought it was an either/or. But I’m curious so how and when, like, how old were you when you got diagnosed? Was it an easy or hard process? What’s your diagnosis story aka saga? We often call it a saga, because it’s often convoluted.

James:  02:03

I mean, I was the same. I didn’t even know ankylosing spondylitis existed until I was in the hospital bed getting told I had it. So, I mean, I’ve got two stories for you. I’ve got the ankle ankylosing spondylitis story. I’ve got the rheumatoid arthritis story. You want me to break down both of them? 

Cheryl:  02:18

Yes, perfect. 

James:  02:19

Yeah. Okay, so, all right. So, I was just finishing uni, I’ve just finished university. I was 21-years-old, and I was planning to move to China because I really wanted to go and explore the world a bit, because I was doing a degree in geography. And I was writing all these articles and essays and things like that on countries I never even seen. So, I was like, you know what? It’s time to go out there and actually see if everything I’ve put in in my thesis was a lie or not. You know what I mean? So.

Cheryl:  02:50

I love that. Yeah. 

James:  02:53

Yeah. I mean even wearing the Chinese clothes today, I’m repping Shanghai, even from South London again. But yeah, so I was doing like a course on like teaching English, because that was like the sort of the idea, the best way I could get out there. And in the meantime, I was working in a, like a bar, like restaurant, just like whilst I was finishing my course and finding a job there, and all the visa stuff and things like this. And I remember, because obviously it’s like bar work. Sometimes you’re working late; sometimes you’re working early. And one of my friends called me and was like, “Oh, do you want to go out for a few drinks tonight?” And I’m thinking, yeah, like, I’m not working until like 6pm tomorrow. Let’s do it. 

So, I’ve gone out. When I’ve woken up the next morning, I’m sort of bit wobbling, and I’m thinking, I must have overdone it on the dance floor. I must have, I must have four hours, I was Shakira or something, and it’s biting me now, you know. So, I’m like, it’s painful, but it’s sort of like I can still wobble about a bit. So, I’ve gone into work. I completely think it’s like all me and, like, all my co-workers, sort of, like teasing me, like, “Oh, here comes hop along just, like, wobbling around and stuff.” And I’m thinking, yeah, fair enough. Like, it’s, I can’t say anything. I’ve obviously done something. Maybe I’ve fallen over, I don’t know. But like, then, like, for like, two weeks I was still, like, it was getting worse. I was, like, limping more and more. And I’m thinking I must have done some serious, like, damage here, like, what’s going on? 

And then, one day, when I’ve woken up to go to work, like, I’m in absolute agony. Like, I can’t move, I can’t get out of bed, I’m like screaming. Like, at this time, so I was living with my parents. So, my dad’s coming, and then, like, I had this sort of, like, gravitational pull of pain, just like forcing me against the mattress. But like, the more I try and move to get out, like, the more intense the pain is, and my legs are swollen, like, really, like, red and just like, ballooned up. Ad I was just, I was just an absolute mess. I couldn’t move. My dad basically had to, like, fireman lift me to the hospital, like, to see — you call it an emergency room. Like, the A&E is taking me there. Immediately I see someone, so I’m 21-years-old, and I’ll get seen by them, and they tell me, oh, they think it cellulitis. Cool, just give me the meds, because it’s like, swollen and red. Like, they thought it was, like an infection or something. So, they’re giving me that, and it’s just getting worse. 

And so I’m going back, like, next week. They’re like, “Oh, we think you’ve got a cyst and it’s popped, and that’s what the liquid is.” At least at this point they’re having to, like, pop my knee and, like, suck out all that, all of the fluids and that, because it’s just like it’s so ballooned that it, I can’t move it. It’s like rock solid from the the inflammation on the joints. And then, it’s got, now it’s gone to my foot as well. So, they’re like, okay, it’s this and it’s a cyst. They gave me something for the cyst. I think they injected me with something. So, I’ve done that, I’ve gone back, and it’s still getting worse and worse. And, like, my pain is increasing. I can’t, I can’t move it even less and less. Like, at these points I’m going in like a wheelchair, and they’re saying, “Oh, I think,” — what’s the next one? Blood clots. They’re like, “We think you’ve got blood clots.” So, they injected me with, like, blood thinning things. 

And, like, all these times I’m not seeing anyone from the rheumatology department. It’s just like all, like, the emergency room doctors that are seeing me. And I’m just going, so basically, at this point, like it went on and on for like months. So, like, probably four or five months, I was just going back and back and getting told, like, a completely different diagnosis, to the point where I was not even believing, like I knew I’d go there. They say something. I take them, I take the pills. Nothing happens. It gets worse. So, I go back. So, I was just going on and on, on and like, my boss is thinking that I’m lying to him, because every time he’s asking, “Can you come back to work?” And I’ve got a new, I’ve got a new diagnosis. You know what I’m saying? Oh, it’s this, is this. So, he thinks I’m just absolutely lying to him, because he’s like, “Wait, you told me it was a cyst last week. Now you’re telling me it’s cellulitis?” I’m like, so I’m like, I don’t even know, man. 

And so, I’m getting all that pressure. But so, basically that back-and-forth, like, four months or something like that later, they finally sent me to a rheumatologist. And like these times, I don’t even know what a rheumatologist is. I just know it’s another doctor. They’re, like, specialized. So, I’ve gone, I’ve gone to go see the, like, the rheumatology team. And they, the guy, literally, he just looked at me, like, checked all my joints, gave me a little rub down and all that. And then, he goes, “Oh, oh yeah, this looks like rheumatoid arthritis.” So, I’m thinking, “All right, cool, doctor. Like, what do I take? And how long does it take to go away with this?” And he’s like, “No, this is, this is something that you’ve got for life. It’s not like,” because obviously my interactions with doctors up to that point was I have a problem. I go see them, I take a few drugs. One week, whatever, I’m back to normal. So, then it hit me, but it didn’t fully hit me, because I was so used to being, like, misdiagnosed, that even this one I was like, all right, cool. That’s this week’s flavor of the month. Do you know what I mean? Yeah, like, next week I’m going to have something else. So, like, okay, this week, I have rheumatoid arthritis. So, it hit me when he said, like, “Oh, you got this for life.” I was like, wow. Like, I really hope this one’s wrong, too. 

But when they put me on, like, the medication for it, like, when I’ve — it hit me, like, it’s weird, because when the medication started to work, that’s when I was most scared, because I was like, oh, wait, it actually is this one, and this is the, the lifelong one, you know? So, up until that point, I didn’t really — I didn’t really like feel it as much. But then, when it started working. Obviously, I’m happy that my pain’s getting better, and I have, like, the mobility is going up. But I’m like, oh, my God, I actually do have this lifelong condition. So, but obviously, because it was so long for me to get that diagnosis, like, I was in a really bad way with my, like, my inflammation and my pain and stiffness and everything. So, it like took it basically from when I woke up that day to when I was able to walk by myself again was probably about 10 months, 11 months, something like that. So, I took — but so I’m still trying to get this China job going, and I’m getting these offers, and I’m like, God, I hope I’m able to walk by the time this starts. So, I’m like, doing the interviews, like, obviously I’m sitting down so they can’t see I can’t get up, but —

Cheryl:  10:11

Wait. And so, at this point, when you got your diagnosis, had you started pain in multiple joints? Or was it still only the knee?

James:  10:22

It was multiple joints, but it was like basically my hips down. Oh, maybe not my hips, actually, at that point. So, it was basically my knees, my ankles, my toes. Just, yeah, knee down, everything there was just swollen and just stiff and just like, yeah, like, completely ruined so that I couldn’t do anything then at all, really. But I did end up having this job, and luckily, like, I was able to get myself back on my feet in time to to start. I did start a little bit later. I was meant to be there in September, I think I was there in, like, October, or something like that. But luckily, the visa took long, so I could blame it on the visa instead of my — but I hid that from them, like I didn’t tell them that I had that. 

Cheryl:  11:09

So, this was —

James:  11:10

I was so motivated.

Cheryl:  11:11

This was teaching English in China? 

James:  11:13

Yeah, I was teaching English. And so, obviously it was kindergarten, so it’s going to take a lot running off kids in that. Yeah, so, but I had, because I was so — I was, in a way, I’m so glad I had that idea before, because it gave me the motivation to, like, really work on, like, that recovery. Because I was like, I need to get out there. I’ve put all this time and effort and money into doing all of this. Like, I’m gonna do this for me, and I’m gonna celebrate in China with my legs walking metal free after this, you know, so like that definitely kept me going. So, luckily, I did make it over there. Managed to find a way to get my medication there was actually quite simple. Like, you didn’t even need a prescription for the, like, methotrexate and that over there. Like, you just paid for it, yeah.

Cheryl:  12:03

That’s amazing. 

James:  12:04

Yeah. And there was, like, no limit. I just went into the pharmacy. I don’t know if it’s different now, but I just went to my pharmacy and got a bit. So, it was, like, really, really, like, simple, because at that time I was just on, I was on methotrexate, hydroxychloroquine, and folic acid and all three I could just buy over the counter. So, it was perfect, yeah.

Cheryl:  12:23

Well, I actually was in China during part of my pregnancy. Actually, my husband was working there in Shanghai. Yeah, yeah. So cool. So, sorry, that’s a little connection point, but yeah, I remember at that point I had weaned off methotrexate, of course, to get pregnant, because you think you’re not supposed to be pregnant with that one. So, I was on Remicade, which lasted eight weeks, so I could go visit him and then come back home and get the infusion. That’s my story. But, you know, I think it’s just, it’s remarkable that, like, that you, you know, didn’t let this — I mean, that you stayed with your goal of going to Shanghai, because I think it would be, it’s a huge, I mean, going somewhere where not a lot of people speak English is really scary and potentially overwhelming. And maybe I’m projecting, maybe you’re more adventurous than I am, but I think that’s really cool that you, that you did that, you know. 

James:  13:17

But that was the, one of the reasons I wanted to go to China, because I wanted to learn Chinese. And actually, like, the first city I moved to was called Guangzhou, and not Shanghai, and no one speaks English. 

Cheryl:  13:28

Guangzhou? Yeah.

James:  13:29

Yeah. So, it was, it was a good place to learn English, but obviously — a good place to learn Chinese — because you have to to survive. But at the same time, obviously the jump is even bigger when there’s, when there’s nothing, like, in English.

Cheryl:  13:43

And you’ve traveled a lot. I mean, I’ve seen your amazing pictures on social media. Yeah, you’re all over the globe, and I want to hear more about on that too. But so, you got RA diagnosis. That’s your first bingo board. We call it like a chronic illness bingo. You got this diagnosis, misdiagnosis. And I really do want to say, for the record, for anyone listening, because I try to intersperse these educational tidbits, that once you start having bilateral joint pain, it’s like a major indicator that there’s something systemic going on, versus like an just a cyst or whatever. So, it’s, I mean, it’s easy. We call it, in the US, like Monday morning quarterback, when you’re like, oh, they should have seen — but once it became bilateral, it’s like, you should have been referred to rheumatology. If they asked me, you should have been referred to rheumatology earlier. Because that’s the cardinal sign. You should never like, if it’s carpal tunnel, you’re going to have it in one wrist. I mean, yes, you technically could get it in both, but, you know, once you have both wrists and then also your knuckles and then also your elbows and your hips and then, okay, then you’re looking at something like an inflammatory arthritis, versus like an injury. 

James:  14:53

I think, I think the fact I was young was one of the reasons why it took so long.

Cheryl:  14:58

And you’re male, I wonder. Sorry, yeah. 

James:  15:00

Yeah. Quite possibly. I don’t really know that that part of it, but I think that obviously the stereotypes of arthritis being like an older person’s condition that even I had, because when they told me arthritis, all I remember is, oh, my grandma has that, she’s 93. So, I’m like, that’s why I thought it was maybe even more wrong. But I feel like even like quite a lot of like the medical community, they probably have sort of stereotyping them too. So, that’s why it takes longer for younger people to get the diagnosis. 

Cheryl:  15:28

Yeah, that’s the — but, you know, babies can get inflammatory arthritis too. So, yeah, these are conditions that anyone can get. But you’re right that the majority of people who present in the ER with horrible knee pain and ballooning of the knee joint. It’s like an injury or like a little process that’s just happening in the knee, not like a full autoimmune.

James:  15:48

Exactly. I think that’s the only nice thing I can say about these conditions, is that it doesn’t discriminate who it’s gonna attack. Like, you can be young or black, white, male, female. Like you can get it. Like, they’re good in that way, like they don’t, they don’t, like, they don’t discriminate who they’re gonna attack on that. But that’s the thing. But there’s still sort of like stigmas and stereotypes about the sort of people that have this. That’s why people like yourself are doing a great job at, like, breaking that down as well. 

Cheryl:  16:17

Well, well, you too. I think I know in rheumatoid arthritis, statistically, it’s a little bit, it’s more common in women than men. But in the chronic illness communities, in the arthritis community online, there’s definitely a lot more women voices than male voices. So, that is something I want to talk to you about, but about what it’s been like, you know, being a male voice in this space. But I first want to hear, how did you then get diagnosed with ankylosing spondylitis?

James:  16:44

Okay, so I made it to China. Everything’s going good. I’m there for about, like, two, two-and-a-half years. I’ve moved cities. I’m in Shanghai now, and I’ve got, like, a new job. I’m not teaching anymore. I’m doing more office. Office. It’s still in education, but I’m in the office, and I’ve never had a job like that before. Because obviously, when you’re teaching like kindergarten kids, you’re on your feet a lot of the time, or you’re a bit more active, right? So, sitting down in a chair all day, I’m starting to get these back pains, and I’m thinking, it’s because I’m maybe I’m sitting funny on this chair or something like that, or I’m just not used to being sit down for, like, a long period like this. 

So, I’ve gone to a doctor and like, yeah, I’m getting these back pains. And he’s telling me, oh, I think it’s like, maybe you got some muscle issues. And I think, yeah, he’s telling me, I’ve got muscles, that’s kind of a little, yeah, the gym’s working out. He’s telling me, oh, go get — I think he gave me muscle relaxers. And I think I got some, like, I got some acupuncture. He gave me some acupuncture. And, like, I think the muscle relaxers did absolutely nothing. But the acupuncture, every time I went, I got a different person. And I feel like, depending on who did it, the relief changed. So, one guy just like flicking them in, and it was really good; and one guy like stabbing me, and it did nothing. So, like, every time the amount of relief I got, like, changed. 

But anyway, it still progressed anyway. So, it got worse and worse. And I was getting ready, it was Chinese New Year. So, Chinese New Year is, like, kind of, like, I don’t know your summer holidays or whatever, when you’re in school. So, like, you have, like, everyone gets, like, a few weeks off work. So, I’m thinking, I’m gonna go to India. I wanted to go, like, backpacking around India, because I wanted to stay in China. But if you haven’t got Chinese family, Chinese New Year’s not that good, because it’s just more like family time. So, best go explore or whatever. So, okay, I’m gonna do, like, a little few weeks around India. But I didn’t have a backpack, which, if you’re going backpacking, it’s quite essential, so I’ve heard. So, I was like, okay, let me go get a backpack. And there was, there was like a shop that sells backpacks, like, a mile or two away from my work. So, I’m going to walk there. It was like an awkward, it was not an awkward locations where there’s no subway near it. So, like, I couldn’t — I had to walk there, but I’m close to it anyway. So, I’ll just walk down and go grab it, and then I’ll come back. And it was Friday night after work. I’ve gone to go pick it up, and I’m walking around this this shop. And I’m like, I’ve never felt this, like level of fatigue before, like completely just don’t be walking around this place. Anyway, I’ve bought my things, and I’m like, I can’t even walk back to the subway station. I’m just gonna get a cab back. 

So, I’ve jumped in a cab back to mine, and it’s Saturday night. It’s a Friday, sorry, Friday night. My friends are like, yeah, we’re going out. And like, I’m not wanting to turn down a Friday night, yeah? So, that’s how I knew that was wrong, because I’m like, oh no, I need to, like, sleep, man, I’m dead. So, I literally just went straight to bed as soon as I got inside, and when I’ve woke up — actually, one more thing the doctor told me to get, like, a mattress topper. Because he said it’d be better for my back if I got a mattress topper. So, I got, I think it was a memory foam one, so you sort of sink into it. So, I’m gone to bed on that, and when I’ve woken up, I’ve got that other gravitational force of pain just holding me down. But this time, like all down my spine. Like, my spine is completely just on fire, and I literally can’t get out. And because I’m in this memory foam mattress, it’s sort of like, I’m sort of stuck in it. And I kind of like, I felt like, I don’t know, like a spider that got stuck in a sink. I’m trying to crawl out, and I’m rolling like, I can’t. I, like, literally, could not get out. I’m in absolute agony. I couldn’t even see to look down to see that my joints have also swollen up, like, because I couldn’t even move my neck. But I’m just there, still rigid, like, in pain. 

Luckily, I had housemates, and they helped me get out. But we are on, like, I don’t know we’re on, like, the eighth floor, and there’s no, there’s no elevator. So, I’ve got like, one guy behind me, one guy in front of me, just like moving my legs down like it was the longest, the longest journey down the stairwell I’ve ever seen. No crutches or anything. I’m just wobbling down. And they’ve taken me, they’ve taken me to the hospital. And at first, I remember, when I first got there, I said, “Give me crutches straight away.” The guy’s seen me, and he’s telling me, “Oh, come back tomorrow or later.” I’m like, okay. Like, they’ve taken, well, they’ve taken, like, bloods and like, urine samples and stuff like that. And they’re like, “Yeah, this is, like, something serious, but, like, we can’t do anything right now.” So, I’ve gone to leave, and as I’m like, literally, I’ve literally just made outside the door, and I started having like a panic attack of pain. Like, I thought I was having a heart attack, but I think afterwards it was a panic attack. But it was like the pain and like the anxiety and just the confusion of everything. So, I’m on crutches, wobbling. 

Luckily, there was a doctor, doctor having a cigarette break and, like, dragged me inside. After I’ve gone inside, they’re like, okay, yeah. Like, you’re, you’re, you’re a mess. They’re like, okay, we’re gonna, like, admit you. So, they put me in a wheelchair. So, I’m speaking to the doctor that speaks English. It’s like, it’s, what, an international one, but the hospital where they admit you is just Chinese. So, like, I speak Chinese, but I don’t know medical Chinese. That’s why I went to that one, because I don’t even know medical English. If someone told me ankylosing spondylitis, I think they’re still talking Mandarin, you know what I mean? So, we’re gonna, we’re gonna admit you, because there’s some, obviously, like something’s happening now. So, they’ve tried to, before they’ve done that, they’ve tried to do like a MRI, and they’ve tried to do scans. But I can’t, I can’t move my body onto the machine, and you’re not allowed to metal inside, like, the whole room. So, and they didn’t have any that would, anything that helped me lift me up. So, my body was so messed up that I couldn’t even get scanned. 

So, they take — so instead, they’ve just taken me to, like the hospital bed. And as I walked in — no, I didn’t walk in, the doctor said in Chinese to, like, the porter, I guess, like, “Oh, what’s wrong with this foreigner? Has he been drinking or something?” But, like, didn’t know I understood him. I was like, listen, doctor, like, but if you’ve got a beer, please, bless me with one right now. Like, it’s been a long day. But it’s crazy because I thought my, I thought my RA was related for me going a night out, and the doctor thought my AS was alcohol related, too, just because you come in as a young person, like a young man on this Saturday afternoon or whatever, or it was like a drunk thing. But anyway, yeah, so I’ve seen — to be honest with you, I’m not entirely sure how many days I stayed in that hospital because I was on some crazy painkillers. Like, they injected me with something and like, I was texting, I was texting my mom back home, like, messages that wasn’t English, wasn’t Chinese, wasn’t anything, I don’t know. It was just there’s loads of letters, like alphabetti, spaghetti, text messages sending left, right, and center. And so, I’m just basically there, and because they can’t scan you or anything, they’re just running on, like, bloods or whatever, like that. And I think I was lucky that I had the RA diagnosis for them to have thought about it. 

So, basically one day, I don’t know how many days later, I’ve been woken up by the doctor. He tells me, “Listen, we think you’ve got ankylosing spondylitis.” And I’m thinking, and I’m hearing that word, and it’s got too many syllables, you know like when a medical condition is so long, like, the longer it is, the more deadly it sounds? That’s the way I put it. Okay, how long have I got? Hes like, “No, no, no, it’s not that bad. But the thing is, we can’t treat you at this hospital for that, but so you gotta go to the specialist one.” So, I’ve got to jump in a cab to the other side of Shanghai. And Shanghai is a big city, and I’m having a bit of bit of a menty b, a little mental breakdown in the taxi there. So, I’m thinking, what is it? And there’s no Google in China. And there’s no, like, a lot, because obviously a lot of things are blocked, so I can’t really even search for it. So, I’m messaging my mom, like, “Yo, what is this?” And I don’t even know, like, how to spell it, I think because he just said this long word really quickly to me. I’m like, “Yo, can you check this?” Like, so my mom’s, like, trying to Google it back home. I’m trying to message my mom to, like, find out exactly what it is, 

Cheryl:  26:10

What year, what year was this?

James:  26:14

This is 2019.

Cheryl:  26:18

2019. Okay. So, just, just, yeah.

James:  26:23

So, yeah, I’m like, what, 20 or something like that. I have pretty terrible math. But yeah, so I don’t know.

Cheryl:  26:33

Approximately in your early, you’re still in your early 20s? Like, so you’re young, like, out there, you know, in a new city, even though you speak some Mandarin, you’re still kind of, obviously, yeah, you don’t know medical, you don’t know rheumatology. Who would know that?

James:  26:52

I’m from England. I like, what do you mean? Like, what do you do for work? What’s your favorite color? Not what’s your favorite chronic illness? Like, that didn’t come up in my classes. Yeah. So, anyway, I’ve gone to the specialist, waited hours to be seen. When I finally get seen, they’re like — so I’ve not actually got an official diagnosis right now, because they can’t do that, because they don’t have any scans and stuff. But they’re like, if it is that one, we’ve got the best physio stuff, we’ve got all the medication, we’ve got the rheum, we’ve got everyone here… But they’re all on holiday because it’s Chinese New Year. So, we can see you in about three months. What? Like, my body is messed up now, like, I can’t wait three months. I can barely wait three minutes, you know what I mean? So, I basically had to come back. So, basically kicked me out. Well, not kidding. I was awful, I can’t stay there. So, I’ve had to go back and book a flight back to London, because I’ve messaged my rheumatologist. God bless her, man. She’s amazing. Like, she was like, “Yeah, I’ll see you second you’re here, I’ll come sort you out.” So, I’ve literally had to book, like, a book a flight. 

And when I’ve been packing my bag, I’m not still on these crazy painkillers, my friends helped me to pack my bag. And I remember her asking me, like, “You sure this is enough?” Like, I’m like, yeah, yeah, yeah. And I remember the first, when I when I got home, I opened my suitcase, I had, like, a few pieces of paper, a football shirt, and like, three pairs of pants, and, like, that was it. Like, underwear, like, I left everything in China because, like, I wasn’t thinking straight. So, I’ve got all my stuff in China. And yeah, so, luckily I made it back. I had to go on a wheelchair. They tried to not let me board the plane as well, because the guy thought that I was, like, at risk. But luckily, so I was flying British Airways, or it was an English or American, Virgin, maybe. And he’s tried to call up headquarters, like, don’t let this guy on. I had a right to fly letter and everything. But because his English was so bad, she asked him to put me on the phone. But I could kind of understood, like, the bad English, what he was trying to say. So, I was like, don’t listen to this guy. I’ve got a letter right now. Like, I’m not going to die on your plane. I might moan a bit, but like, I’m sorry if I disrupt your customers experience, but, yeah, I’m just trying to get back and see a doctor.

So, I managed to get back, and then it was like another, it was probably another few months before I could get my official diagnosis for that too. Again, I was getting my joints stabbed, like emptied, I guess. I remember the first time when I went to go see my rheumatologist, she had to get, like, one of the other doctors to check my knee to make sure she wasn’t going to stab into my muscle, because it was so hard, like, the inflammation balloon was so like, hard. She was, like, “I don’t know if that’s muscle under there or that’s just, like, really, really built up joint fluid.” Now, when she stabbed it in, like, literally, it erupted like a volcano, like, the needle went flying in the air, just like spurting everywhere. I got like blood all over her, all over me. I kind of wish I filmed it. It was, like, kind of, it was disgusting but kind of cool. I hope I don’t have enough opportunity to make that video, but yeah,

Cheryl:  30:24

Oh, that’s, yeah. I know I have never had to have my knees drained. I know my friend Allie, she’s had that numerous times. And yeah, it is a very painful thing. 

James:  30:37

But for me, for me, it’s not pain, it’s discomfort. Because you can feel this little needle, like wobbling around your bones and all that, but like, it doesn’t, because you are getting a release at the same time. So, maybe the pain is sort of like balanced out by the fact that the pressure is going down. But it’s just feeling that little intruder in your skin, that’s the most disgusting part. But yeah. So, then I got my official diagnosis a few months later, because I had to wait for MRIs and things. And the first MRI I did, they didn’t even look for — they just wrote about I had, because I had some slip discs as well that I didn’t know about. So, the MRI just mentioned slipped disc. So, my rheumatologist told us, like, wait, what about the whole like, AS thing that we’re looking for? So, I had to go back and do another one because they couldn’t do it for some reason. So, I’m like, okay, all right then. So, that was a few months, and then I had to wait, like, maybe, like another month or two to get my medication done. So, that was, like, another year of my life where I was on wheelchair or crutches. And I recovered just in time for Covid in China. Then Covid happened in China, then Covid happened everywhere else. So, then I was looked inside again, but at least I made it out.

Cheryl:  31:58

Oh, my gosh, I didn’t even connect those dots. Yeah, I asked what year it was, and I didn’t, that’s just, you’re just unlucky. And, you know, yeah, typically, again, just interjecting a little teachable moment is that rheumatoid arthritis does not tend to typically — but like I said, there’s exceptions to every rule — does not tend to affect the spine. And if it does, it’s the cervical spine, like way higher up in your neck. Again, it can, you can have RA with some spine pain, but typically if you’re starting to have really bad back pain and hip pain, like the bigger joints, shoulders, hips, back, that’s like a symptom of ankylosing spondylitis or another — there’s the whole family of spondyloarthropathies, which actually, coincidentally, the non-intuitively, includes psoriatic arthritis and ankylosing spondylitis and non-radiographic axial spondyloarthritis. Even more!

James:  33:02

Yo, you smashed the pronunciation right there. I would have butchered it. 

Cheryl:  33:05

Oh, I’ve had to practice. But, so, you know, that leads me to my next question of, so you were saying that, you know, you were just waiting to get on the treatments. How has the treatment journey been going for you like in terms of, like, you know, have the medications worked, or has it been up and down? 

James:  33:23

And, like, my medication, I’ve got so lucky. For my as medication I’m on — over here, we call it Etanercept. I think you call it Enbrel over there. And that was the first biologic I tried, and it, well, not instantly, of course, but like, I’ve not had to change, I’ve not had to change those. Like, I’m one of the lucky ones. I know, yeah, do you know what I mean, like, hopefully, God willing, I can keep it that way, you know what I mean? But we’re like, what, five years deep, and it’s still, it’s still going well.

Cheryl:  34:00

Are you still on methotrexate too?

James:  34:02

I’m still on methotrexate as well. Yeah.

Cheryl:  34:05

Often, that’s done. Yeah, sorry. 

James:  34:08

The idea of trying to stop it. And then, I’ve got some psoriasis problems as well. But when I stopped the methotrexate, the psoriasis went crazy. Back on you go, back on you go kind of thing. I’m on a lot less than I was before. I was on the lot before, but I’m still on both of them. To be honest, I can’t remember my first, my first RA treatments, whether it was that or not, because I was on so many different, like, medications for the other stuff. They thought it was, like, it’s kind of hard to keep track of what was on all the time. And I was, I was proper out of it, like I was just drained emotionally and physically that I can’t remember. But let’s say it was that I stopped taking the hydroxychloroquine. They told me to come off that, and I didn’t, didn’t feel any changes after. But yeah, the methotrexate and the the Enbrel, they’ve been good to me. I can’t lie, I’m very grateful for that. 

Cheryl:  35:08

One of the things people don’t often know is that taking methotrexate along with a biologic like Enbrel, methotrexate can make you less likely to develop antibodies to the medication, to the biologic. So, that’s sometimes why, as I remember asking my doctor, why am I still on methotrexate? Because it was the first one, and then they added the biologic. And I was like, well, same as you, can I wean down on it? And because my story’s all longer, because I’m, you know, I’m now 21 years into having, 22 years, into having RA. But just, you know, that’s one of the, one of the reasons. But was it — yes, oh, my gosh, I have so many follow up questions. Well, I’m curious. Like, when did you start sharing your story publicly? Like you, I discovered you on Instagram and, like, ah, someone else who’s kind of posting, like, fun, you know, fun videos, but also serious stuff sometimes, or, you know, just slice-of-life and then all this travel, yeah, when did you start sharing that? 

James:  36:13

So, for me, I kind of, I like to say I was in the chronic closet before. I had my diagnosis, but I didn’t really share it with — my close people, they knew, of course, but like, when people would see me out with, like, crutches and stuff like that. At this time, I thought, like, arthritis isn’t really a sexy thing to be telling people, man. I can’t be a lot of going on all day talking about arthritis. Man, she’s going to think I’m weird or something. Like, even I felt like I was sort of like gate crashing the pensioners club a little bit, you know what I mean? Like, I didn’t really, I didn’t know anyone else like my age with these kind of conditions. Like, I was even looking for the other day, I found the leaflets they gave me when I got diagnosed, just all old, like, loads of old ladies in every picture, doing like yoga. Like, there was nothing like when I was in a rheumatology office, I didn’t see no one who looked like me there. 

So, I thought I was kind of, like, I was kind of embarrassed about it, to be honest. So, I never, I never even thought to look to social media for stuff like this. I never really thought to even talk about it. Like, when I was on crutches, like, people come up to you, people always love talking to people on crutches. Like, “Oh, what happened?” So, I remember the first time I told them the honest answer, and they, like, felt really awkward. The next time I was like, “Yeah, I got bit by a shark, yeah, like, surfing accident.” Like, I was telling also, I was like how — I basically really gave myself, like, what’s the most outrageous lie I can tell someone? And so —

Cheryl:  37:46

Oh, my gosh, I was gonna say, wait, I have one for you. Just an idea, because I think you might like it. When I’m wearing a splint, sometimes people say, “What happened to your hand?” And I say, “My immune system.” They’re like, what? My immune system. It happened. It’s just my immune system thinks that all of this is bad, and it’s trying to make it go away. My hand. So, no, but then I say, yeah, that’s, you have — and I think having that, I call it internalized ableism, right? This idea that maybe you’re less than or that, yeah, maybe, I mean, we all — I had, too, internalized ageism. Like, I don’t want to be seen as old, and you were young. You’re a young, vibrant person. There’s no representation of people like you at the time. You had never encountered any posters or any educational materials, anything. So, and then the general public doesn’t know what these conditions are, so it’s totally, it’s —

James:  38:46

And I was too, I was too new to it to break it down properly, because even I was trying to understand it myself, you know, like, it’s a lot to take in. I just finished university. I’ve got to learn this world, too. Now, I gotta learn about my immune system and my, like, all this, and my blood test and everything. So, I sort of kept it to myself a bit. And then, when Covid happened, like, basically there was, in the UK anyway, I basically got sentenced, like a prison sentence to stay inside and away from people for my own safety, because I was, like, it was called the vulnerable list. So, we had different rules and stuff from everybody else. And I was, like, I was really scared. Basically, I was there thinking, because I got, basically, I got no immune system because of my medication. I’m thinking, if I get this, that’s me finished. So, I locked myself away. Like, ended up being, like, a year and a half. I didn’t see, like, no other human being except seeing the delivery man, like, through the window. Like, I was properly inside. Nothing, just these four walls here. So, obviously, when, obviously, I got my friends asking you, like, “Why are you not coming out?” Like they said, “We can go to the park.” And I’m like, no, it’s different for me. 

And then, I thought, listen, I knew I was going to have a long time inside. And I’ve got a friend called Ava. And she, every time I used to, like, I went to university with her. And we would meet up for coffee and that, like catch ups and that. And she would tell — she does amazing things for charity, like she does things for, like, kids with autism and helps people in like, Kyrgyzstan and everything. And she’d always have these amazing, I’m like, wow. Like, I really want to be like her. She’s — I’m like, what did you do? She was like, “I saved a thousand kids from ISIS.” And I’m like, “Oh, yeah, I got drunk in Shanghai,” you know what I mean? Like, it’s not the same, but it’s not tit for tat. I’m like, I want to, like, make a difference. So, I was thinking, if I’m going to be locked inside, at least, like, maybe I’ll do like a bit charity work, or something like that. So, I was thinking about what kind of charities I could help or whatever. 

And then, I saw there was a charity called Versus Arthritis. And I was like, okay, cool. I have arthritis. Maybe, maybe I can help with something, or, I don’t know, just do some admin stuff. I’ve got a bit of knowledge there. So, I’ve DM’d them or emailed them or something. I’m like, “Hey, like, I’m just wondering if there’s anything I could volunteer doing, like, I’ve got a lot of time,” and there’s only so much FIFA a man can play in one day. Yeah, yeah. Like, help myself, and let me help you. Let’s do like, a little —

Cheryl:  41:16

I love that. That’s amazing.

James:  41:20

So, like, they got back to me. They’re like, how about we have, like, a little call and we’ll chat about things. Like, okay, cool. So, I spoke, I spoke with them, and I basically said the same story I told you, my diagnosis story, and how I’ve been experiencing it since then. And they’re like, “You know what? This is, like, a really interesting story. Like, can we write an article about you?” And I was like, I was like, wow, that’s cool. But at the same time I’m thinking, oh, I’m not told anyone I have arthritis. I’m like, this is, I don’t know how this is gonna go down. I don’t know, like, I don’t know how my friends would take it, or, like, not even my friends, like, you know, like your friends get like you’re cool with, but you’re not like close with, you know? 

Cheryl:  42:03

Yeah, acquaintances. 

James:  42:05

Yeah, acquaintances. And just like the wider public. I’m like, they’re gonna out me as an arthritic. So, I was a bit nervous, but I was like, you know what? Even if they do hate me, they can’t — I’m not gonna be outside for them to throw tomatoes at me. Like, I’m locked inside. Try find me. Yeah, maybe they’ll forget by the time the vaccine’s gone. So, it’s cool. So, I was like, yeah, run it. Run it. And then, when I saw they posted the article, I was seeing not only was I getting a lot of love from even my friends and my acquaintances and that. And I was just seeing strangers pulling up and saying, like, “Wow. Like, I have this too.” And that’s when I started seeing that there was, like, other young people out there that are, like, going through the same thing. Like, I didn’t even — even when I was having that conversation with them, I didn’t even think there was other young people with arthritis. I thought that’s why he said, “That’s really interesting,” because I was young, not because of the fact that I’m in China and doing all this. I thought it was just the fact that, like, “Oh, we found a young, we found a young one!” you know? 

So, and then, when I went, so, when I’ve seen that there’s like so many other people out there in the same situation as me, like, one, it helped me embrace, helped me embrace and accept my condition for me as well. But also, I was thinking, you know what? Like, let me, let me just, like, let me have a little see if I can help the other people, too. Like, obviously, I’ve tried to do the charity thing with them, but I’m like, okay, like, this is a tough time for everyone. Like, not everyone’s got the same, like, mental, I don’t know, mentality, or whatever to get through. It was like, Covid was the awful time for like, everybody, whether you had a condition or not. So, I was like, okay, let me, let me dip my toes in this advocacy thing. I didn’t even know it was called advocacy. I was like, let me just post a few about arthritis. Well, the first one went well, maybe I can help some other people. And then, from there, it just sort of spiraled. And I started writing articles and doing videos and all this and that. And, yeah, it was just literally, it was just like Covid helped me come out the chronic closet and get my arthritis out to the world. 

Cheryl:  44:07

Well, I mean, I really relate. Like, I mean, I wasn’t quite as nervous about talking about it, because I’m just one of those people that’s just barfs all my thoughts out to the universe at all times. But I was more similar to you. I really, before I started sharing it more publicly, I was really thinking about all the negative parts of sharing my story versus the positives, right? So, I was thinking, oh, but what if an employer sees it? What if? And then, it’s exactly the same once you see other people’s responses, yeah, you’re going to get a troll here or there that’s like, “Dude, you’re weak.” Like, someone said that to me. I’m sure, as a male figure, you get even more, you know, like, “Why can’t you just open that? Why do you have to use a gadget?” like, you know. 

But seeing the responses of other people with arthritis, and, you know, just for the record, there are more, in the United States, there’s over 300,000 kids that have juvenile idiopathic arthritis and like similar kinds of like juvenile autoimmune arthritis. It’s actually more than juvenile diabetes. But the awareness is so low. That’s just for kids under 18. So, young adults, it’s not the most common condition for young adults. But I was trying to find, as you were talking, like, what’s the actual number of people living who are like young adults who have rheumatoid arthritis. I couldn’t find it. But, you know, you’re not the only one, but unless you see stories of other people, you feel like you’re the only one. So, that’s, you know, I’m going to put a link to Versus Arthritis in the article about you, because they’re great nonprofit. They’re amazing. Yeah, they’ve had, they’ve shared so many stories. 

And, you know, I think, like I mentioned earlier, representation matters, not just for the disease, but also for different, like, you know, genders and that, again, most people, I’ve talked to other men with arthritis who’ve said that they just felt really isolated because maybe they discovered a couple people’s stories, but they’re all, you know, female voices. Like, have you heard — what have some of the responses been and what does it felt like to be a male arthritis influencer or arthritis sharer, advocate, whatever you want to call it?

James:  46:18

It is crazy, though, because firstly, like, I know, yes, I hear a lot of women talking about it was difficult for them to get their diagnosis because there’s a stereotype of that being a male thing. And I’m sure there’s other ones, there are other ones like that too, where people just wrongly think it as well. But if you do look online, you would never have that idea. You’d think it’s the other way around. But realistically, both of those ideas are wrong, because it’s like, it’s probably, I don’t know the numbers, but I imagine it being 50/50, like, I don’t really see it being a difference like that. But I think the issue is not like the men don’t have it. It’s the men don’t want to speak out about it. Because chronic conditions and that there is, there’s a lot of feelings involved. There’s feelings, whether that’s physical feelings of pain, and then the emotional side, too. And as men in a lot of society, we’re sort of conditioned to not, like, open up about our feelings, or risk of feeling weak. So, I think that’s the biggest stumbling block that a lot of people, like a lot of men, I would say, don’t really want to open up about their condition like that, because they think that might look weak. 

And I admit it, like I was a little bit like that. That’s why I was telling girls I got bitten by sharks. And that was what, like, this is not going to do. But then, I realized, like, there’s nothing weak about having a chronic illness. If anything, there’s strength. Like, the things that we have to go through on a regular basis; other people, they couldn’t dream of it. Most people are scared of syringes and pills and stuff like that. We have to go through that, everything. We have to — we’re playing life on hard mode, like, waking up every day, we’re playing live on our mode. If anything, you’re stronger, like, open up by it. It takes a lot more strength to come out and explain your feelings and talk about these things than it is to sit there and just do nothing and pretend it’s not, nothing’s happening. That’s how I see it anyway. And I try and try and get that across in the most jokingly way I can, because I think that’s the best way to get across to people that are on the fence. But like, I get messages, when I get messages from, like, guys with chronic illnesses, it’s always like, “Oh, you’re like one of the only people I’ve seen, like, talking about this. Like, I wish I could do it,” but do it then. Like, I don’t want to be like, I don’t want to be the only one in here who’s doing it like this, you know what I mean?

But I think that is a major reason why people don’t want to come forward and do it. But listen, man, there’s room for the medicated men, needs to come through and show us that we’re still here, man, and support the other guys, because, like, the whole holding in feelings thing is just going to make it worse for you. Like, I when I remember I was, I think it was when I was coming back from my AS, I was in, like, a dark place mentally, to be honest with you. Like, just before I got my condition, like one of my, like, best friends had passed away, and then I had the condition on top, and then I lost my job because of my AS. They actually sat me and threatened to tell China that I was a terror threat if I tried to get the money they owed me for canceling my contract. It was all —

Cheryl:  49:32

What?

James:  49:33

Yeah. Yeah, yeah, yeah. That was the whole other thing. My mind was spinning. I was, I was like, I was just being a toxic man. I was punching walls and stuff, like, I couldn’t even get up. I was just punching the wall there. There I was, and I was I was holding it all in. And then, I just thought, like, this is that such a waste of energy, man, like I’m holding it in. It’s making me suffer more, and I’m trying to get better, do you know what I’m saying? So, when I started talking to people, I would like, I really, like, the relief of it was amazing. And when I started posting even more like I felt like I didn’t have to hide anything, like I didn’t have to lie about, like, my condition and stuff. I found other people to connect with that understood me. And it’s just such a better way of living, just being open about it and talking and not taking out — you’re going to hurt yourself holding it in, holding it is going to hurt you. Like, why are you going to worry about what other people say? I don’t really get that many, like, hate messages. But, like, if they do, that’s just their problem. That’s them projecting their issue. Yeah, I’m trying to get rid of mine. I don’t mind about you. You want to have yours, get over there. 

Cheryl:  50:38

Right. Right. No, that’s so, so true. I really, really hope — I know that this is like touching people who are listening. And, you know, you don’t have to be public about every single part of your experience, you know, but just if you’re on, if you’ve been wanting to, but then your fear is holding you back. Hopefully, this will inspire people, because the more voices we get out there, the less, like, if you had seen someone’s account, like flashback to 2017, or 2016 when you got diagnosed, if you had to come across the profile of someone like you who’s traveling the world, who’s doing their injection in a funny way, in front of Big Ben in London and like in the Caribbean, you know, you wouldn’t have felt so isolated, right, you know, so.

James:  51:27

A hundred percent. I would have felt like, okay, there is like, light at the end of the tunnel. Because I think when you are diagnosed, you kind of need to remember, like, that is your start, and how you’re feeling then is not how you’re going to be feeling soon. Like, you’re getting to know your body. You’re getting to know your condition and what medications work and what other treatments and other exercises or whatever works for you. So, seeing someone at the end of that is quite motivational, would have been quite the motivational, motivational for me if I was to see that. And I really do wish I looked at, like, finding the online community a bit earlier. Because I was going at it alone for so many years, and I didn’t — I never really had any conversations about my condition, except for with my rheumatology, like, my doctors, like once every six months, whenever they had time to see me. So, like, a lot of the time, if I was to have a conversation, it was just falling on deaf ears a little bit. So, like, I do wish I found that there, but I’m so grateful I found it at the end of the day anyway. It’s really helped me a lot. And I met some amazing people out there, too, as well. There’s so many, you meet some cool people from all around the place. Like, a lot of the time when I go traveling, like you said, I meet all with spoonies and stuff, like, when I’m there. 

Cheryl:  52:54

Yeah, yeah. I want to do the Arthritis World Tour. It’s just a concept I have where I just travel around the world and meet all the people. I sometimes look on the podcast, and I see, you can see where people have downloaded it from. It’s like New Zealand, South Africa, Chile, you know, all over Europe, Middle East. I’m like, wow, so cool.

James:  53:17

I got you over here. I’ve got you when you come to London.

Cheryl:  53:21

Oh, totally. Yeah, I would love to. Well, I mean, for today, unfortunately, I want to talk to you forever, but I do need to start going to a couple of the rapid-fire questions before we wrap up. Sadly, went by too fast, but, you know, I mean, you have, you’ve just shared so much wisdom. But do you have anything that you’d particularly like to share, like, best words of wisdom for somebody brand new diagnosed who might be listening?

James:  53:46

Brand new diagnosed, I think, don’t waste your energy on what if. Because if you’re going to go, you might go down a Google rabbit hole, and that’s a dangerous thing, too. It’s good to stay informed, but when you start looking at all these worst case scenarios and stuff, it’s going to get you worked up. But don’t waste your energy on what ifs. Use that energy and getting yourself like, not better, but like working on yourself instead, trying things and trying to find what, like, bit of trial and error to work what to work out what helps you the most. Because I was panicking. I was like, oh, I’m going to be in a wheelchair forever. And that held me back way more than my condition probably was because I had this mindset that I’m going to, like, what if this happened? What if that happens? 

Like, that’s wasted energy. Just focus on yourself. Be like, “Cool, this is my situation now. Let me see what I can do about it. Let me see what’s out there that can help me.” Not what can it turn into, like, Let me deal with this now, because you wouldn’t, you’re not going to leave if you’re going to have that energy of ‘What if, what ifs’ you’ll never leave your house. You’ll never get in a car. There might be a — you’re not going to start your car thinking, “Oh, might crash today,” you’re gonna get in and do it. The same energy is that. Work on yourself now, make sure you’re doing the right things, or find out what the right things are for you is a way better use of your time and energy.

Cheryl:  55:11

I love that. That’s, I’m gonna do a super cut some time with all the different people’s, like, best words of wisdom. And then the last —

James:  55:19

That wasn’t very rapid-fire. I’m sorry. 

Cheryl:  55:21

No, no, there’s no such thing. Yeah, what — and I’m just going to skip to the last one. What does it mean to you to live a good life and thrive with rheumatic disease?

James:  55:33

What does it mean to — wait.

Cheryl:  55:34

What does it mean to you, like, what does it mean to you to live a good life with rheumatoid arthritis and ankylosing spondylitis?

James:  55:42

It means that although I acknowledge that I’m going to have to do things differently at times, I can still get out there and live the life that I want to do. I might have to do it differently, but I’m still going to get out and do it and find the ways that I can do it. Like, for example, like the whole traveling thing, that’s always been my passion. Going there, seeing crazy stuff, being shocked by different cultures and things like that. Like, I love that so much. And when I had my, when I first got diagnosed and stuff, I thought it was over. I was like, you know what? No, it’s not. I’m gonna do it differently this time. I’m gonna have to just, I’m gonna have to smuggle my drugs into countries in a legal way, and things like that. 

But like, yeah, just you might have to cut — not cut corners, basically the opposite of cut corners, whatever the opposite of cut corners is — to find the ways to make it easier for your body to do it. Yeah, yeah. Find the life hacks. Find the life hacks. And still stay out here and thrive instead of surviving. You’ve got a passenger all times, you got a plus one in your body. That’s it. You gotta, you’ve gotta sort of accept that he’s coming with you on the trips, but you’re still gonna have the trips and you’re still gonna have a good time. You’ve gotta keep the right energy. And don’t take things too seriously either. Your body is joking with you. It’s only right that you laugh back. You know what I mean? Have a little bubble. Have a little joke, though, about it.

Cheryl:  57:04

That’s perfect. I love that. And you’ve used, like, that’s actually a metaphor that I learned when learning Acceptance and Commitment Therapy. They call it like the passengers on the bus metaphor, where you’re like the things in your life that aren’t going well, things that are like things, things causing you anxiety. Whether it’s your health issues, it could be some external thing like financial worries. Can you just let them be passengers on the bus, along for the ride, and not let it like derail you? So, it’s beautiful. Mic drop. Okay, I’m gonna put all the links for you in the show notes. They can find you at James Hollens right on Instagram. And thank you so much for taking the time to share it. I know it’s a lot to go back in time and think about those early days of your diagnosis. So, I appreciate, appreciate you and —

James:  57:51

Appreciate you too, long time, fam. Any time for you, Cheryl, come on, man. I’m very grateful for you to invite me here today, and it’s been amazing chatting with you. 

Cheryl:  58:01

You too. We’ll have to do a part two, because I feel like we have so much more. 

James:  58:04

Oh, man, we’re just getting started. 

Cheryl:  58:06

Stay tuned. Stay tuned. All right. Thanks again. Bye-bye for now.

James:  58:11

Thank you.