Episode Joel
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The Worst Good News: What to do When Test Results are Normal but you Feel Awful? Joel Nelson’s Journey

May 13, 2021
61 min read
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On Episode 34 of the Arthritis Life Podcast, Joel Nelson, who has Juvenile Idiopathic Arthritis and psoriatic arthritis, shares his recent journey of unexplained neurological symptoms despite “normal” test results. He also shares lessons he’s learned from completing an intensive multidisciplinary Pain Management Program. 

Topics include:

  • Joel shares what it was like to grow up with juvenile idiopathic arthritis
  • Joel explores the vulnerability of doctor patient interactions and the concern chronic illness patients often have of being perceived as hypochondriacs.
  • Joel and Cheryl discuss the imperfections of our current health systems, and the fact that “No Established Cause doesn’t mean No Problem.”
  • A group Pain Management program helps Joel rewire how he thinks about pain
  • Cheryl & Joel share tips and exercises for mental wellbeing despite chronic illness

Speaker Bios:

Joel Nelson: Writer. Arthritis Advocate. Dad. Sharing my story of Juvenile Idiopathic Arthritis to raise awareness. Specialising in pain, parenting and mental health. Also writes for leading charities and organisations.

Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen 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.

This episode is brought to you by the Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.

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.

Here’s the show breakdown:

1:00 – Introduction and Joel’s diagnosis story.

3:00-11:30 – Joel reads from his blog post, “No established cause doesn’t mean no problem.”

11:45 – Cheryl & Joel discuss the vulnerability of seeing new specialist doctors. Joel expands on his experiences with the neurologist who had not reviewed his medical chart.

15:15 – Cheryl & Joel discuss being worried about being perceived as a hypochondriac, and the challenges of filtering what information you share with a doctor / medical provider.

22:45 – Joel expands on his emotional response to the test results letter he received from the neurologist with his test results.  Cheryl & Joel discuss the imperfections of our current health system.

28:00 – Cheryl expands on how patients who have difficulty functioning in daily life deserve access to care, for example occupational therapy, even if there is “no known cause.”

30:00 – Joel explains what his GP (primary care) said after his neurological test results were normal. He went through pain management therapy which included disability adjustment training. He made a conscious choice to put his energy into adapting to it and making peace with it, yet continues living in fear that a neurological episode will happen again. 

35:30 – Joel talks about his Pain Management program, which included group therapy, individual therapy, occupational therapy, physical therapy, learning about pain and special wellbeing topics. It helps him “rewire how he thought.” 

40:00 –  Cheryl’s perspective about finding a balance between trying to heal or eliminate pain, and building our capacity to adapt to our life as it is, even including pain.

42:30 – Joel describes a helpful exercise from his pain management program: writing down the biggest issues with your current situation and recognizing that pain wasn’t necessarily the biggest problem, it was partly the spiraling thoughts around it. 

46:30 – Cheryl’s analogy for positive versus negative thoughts – like a radio station you can choose to fight them, try to constantly turn them up or down or drown them out, or we can just acknowledge that they are simply there, sometimes they’re helpful, sometimes not and I can continue going where I want to go despite them. 

48:00 – Joel’s realization that he might not be able to turn “off” the negative thoughts, but he can let them have less power over him. Example of his work as an IT manager and how he struggles with guilt when he takes time off.  

51:30 – Cheryl and Joel reflect on how having to say no and take sick days challenges your sense of self. Discuss the challenges of activity pacing when you are a parent.

55:00– Concluding thoughts – link between physical and mental health. Don’t be afraid to ask your medical providers questions and be involved with decision making.

Full Transcript:

[00:00:00] Cheryl: 
[Introductory note]  

Hi there! I’m so excited to welcome you to The Arthritis Life podcast where we share arthritis life stories and tips for thriving with autoimmune arthritis. My name is Cheryl Crow and I am passionate about helping people navigate real life with arthritis beyond joint pain. I’ve been living with rheumatoid arthritis for 20 years and I’m also a mom, occupational therapist, video creator, support group leader, and I created the Rheum to THRIVE self-management program. 

I am so excited to help you live a more empowered life with arthritis. We’re going to cover everything from kitchen life hacks, to navigating the healthcare system, to coping with friends who just don’t get it. Seriously, no topic is going to be off limits on this podcast. My interviewees and I share our honest stories of how chronic illness affects our lives. This includes discussions about mental health, sex, shame, pregnancy, body image, advocacy, self-acceptance, and so much more. You’ll hear stories from all ends of the spectrum from a person who’s living in medicated remission from psoriatic arthritis to somebody living with severe mobility restrictions and severe pain from rheumatoid arthritis. 

You’ll hear how people manage their conditions in different ways like medications, mindfulness, movement, social support, work accommodations, and so much more. You’ll also hear from rheumatology experts who just get it. We’ll dive deep into the science behind chronic pain and what’s the latest evidence for lifestyle changes that can help you thrive with arthritis, including exercise, sleep, nutrition, stress reduction, and more. This is your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.     

Hi, my name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years, and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks to how to respond when people say, “You don’t look sick.” Stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness – no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started. 

Hi, Joel! I’m so happy to have you on the Arthritis Life Podcast. 

[00:02:43] Joel: 
It’s great to be here. Thank you for inviting me. 

[00:02:45] Cheryl: 
Yeah. Can you start off by just sharing with the audience a little bit about yourself and your relationship to arthritis? 

[00:02:51] Joel: 
Yeah. My name’s Joel Nelson. I’m from the UK, a city called Norridge, and I have juvenile idiopathic arthritis. I sort of developed symptoms around about the age of 10, just before my 11th birthday. And then, in my mid-twenties, I start getting psoriasis and psoriatic arthritis. But because of the age of onset, it’s sort of known as psoriatic-associated juvenile idiopathic arthritis which is a mouthful, and it’s gonna feel very weird the older I get still using juvenile in the title.

So, yeah. So, it is pretty much all I’ve known. I’d be pressed to remember a time before I had arthritis and this last two years, I’ve sort of, I’ve gone very much full circle. I was one of these people that didn’t talk about my arthritis. I very much hid it away a little bit I suppose, embarrassed by it. If I had a flare, I kind of cut ties of everything I was doing at that point in time, whether that was sport club or something like that, and moved on. And realized that living a series of chapters was not a healthy way to sort of live your life. So, in 2019, I became a dad and started thinking about how am I as a role model and went completely the other way. And now, all I talk about is my condition and life with chronic illness. 

[00:04:12] Cheryl: 
No, and that’s great. And it’s really great to acknowledge that, you know, a lot of times people say, “Oh, how did you become so comfortable talking about your chronic illness?” And it’s an evolution for a lot of people. It’s not like you get diagnosed and you’re like, “I have all these coherent thoughts to share with the world about this.” Like, it takes time. So, yeah, I appreciate you mentioning that. Yeah. And how old is your son? 

[00:04:35] Joel: 
So, he was two in January. 

[00:04:37] Cheryl: 
Oh wait, you just said he was 2019. Like, I can do math, okay, I should be able to do the math.

[00:04:42] Joel: 
We don’t need to make anyone else do the maths for it. Yeah. So, yeah, so he’s coming up sort of two-and-a-half now, which goes very quickly.

[00:04:49] Cheryl: 
That’s wonderful. I wanna start off this episode a little differently than how I normally do it because I’ve, you know, felt like I’ve known you for a while just through following your story on social media, But you wrote a post on February 28th, 2021 that was called ‘No established cause doesn’t mean no problem’. And this just, like, touched me to my core. Like, I just resonated with so much of it and I am so grateful that you’ve agreed to read this post, this very heart wrenching post like in its entirety for the podcast. We’re gonna start with you reading it and then I’m gonna ask you some follow up questions.

[00:05:29] Joel: 
So, yeah, this is ‘No established cause doesn’t mean no problem’. I’m heartbroken. For over seven years. I’ve reported neurological issues. Last year, I finally got hope that we would get to the bottom of this miserable set of challenges when my rheumatology team pronounced me active disease free regarding my arthritis, clearing the way for neurology to examine me in isolation finally, without anyone palming my complaints off as just my arthritis or diagnosed chronic illness.

A year of pain falls and more. Last year, probably in part due to the pandemic and shielding stresses, one of these episodes as I’ve come to call ’em returned and with a bang. With the great news from my rheumatology team, a unique opportunity presented, so I pushed harder than I’ve ever pushed for answers in my life.

I got through some pretty long, dark days with this hope. Hope that I would finally know why my hands and my feet randomly went numb or felt like they were in scalding water. Why I would get hit with waves of fatigue that would floor me, cause me to fall downstairs, and walk into doorframes. Why I embarrassingly had toilet accidents that I never felt coming or answers as to why I had to pull over at the side of fields in the middle of nowhere with my crying son as I was suddenly no longer safe to drive.

So, when I got reassigned to neurology for the third time, I thought this would finally be it. I was slightly disappointed when my neurologist said I didn’t have a separate neurologic neurology file and that everything was bundled into one, and I mean bundled. I always know when I’m next in line to see the consultant as few rival my piles of notes on the metal clinical tray outside the doctor’s door resembling something as big as a pile of Sunday newspapers, and just as frayed and tatty as the previous week’s unsold ones, held together by string these days, given there aren’t elastic bands large enough. Nobody’s joining the dots.

The neurologist knew little of my previous concerns raised over the best part of a decade. As these episodes came and went, I found myself deflated as I tried to condense years of experiences into the few minutes of precious time I had with this man. This stranger, who I so much depended on. The deflation was exacerbated as he clearly picked and chose what he was interested in.

For example, the life altering stuff that was most impacting my daily living, such as the fatigue and the falls barely registered. In contrast, the numbness and the pins and needles clearly pricking his ears for the few moments he would spin from his default position of back to me, taking notes, to actually make brief eye contact and listening without multitasking on what I was saying.

The repetition, the cramming in of information, the pointing out that I’ve already had that test numerous times and carefully choosing what to and what not to say for fear that he would lose his interest or I would sound simply crazy from the depth of symptoms and experiences was exhausting. However, hope was restored when he said he would create a separate neurology file, go through all of my notes and press on with a brain MRI, another nerve conduction study. And at this point, he made no secret about the theory, multiple sclerosis or MS, or possibly biologics induced MS. 

I was shocked. He said it so casually I had no idea that my arthritis treatment could even do that. He also seemed so sure, sure enough to mention it without any tests. Anyway, I left after what seemed like a whirlwind few minutes, confused, back on the scrap heap. Fast forward a couple of months and as expected, the nerve conduction study test came back clear, just as my last one had several years before, indicating that the issue was central rather than with a peripheral nerve level. Even the clinician conducting the test said beforehand, those symptoms, this will be clear. You really need that MRI. 

I had the brain MRI, which unusually was a test I hadn’t had before after years of neck and spine MRIs, and even a brain CT scan after one of these episodes previously caused a migraine so severe that they thought I might have had a stroke. I had the MRI and I waited after a painfully long three weeks in which I’d managed to convince myself a full 360 degrees of possible outcomes from, ‘Oh, I heard nothing in the first week, so it can’t be that bad’ to ‘It’s been too long. It must be complicated’. 

I received one of the most disheartening and infuriating letters I’ve ever received from a doctor. It read: ‘MRI Brain, 7th of February, 2021 is reported normal. There is no radiological evidence of CNS demyelation. Investigations have not established a cause for Mr. Nelson’s symptoms. I’ve not arranged to review Mr. Nelson, but if he has new or progressive neurology, then please refer.’ That was it. 

So, after a year of waiting since this new episode begun just one 10-minute consultation and two tests of which one being a repeat, I’m back on the scrap heap to wait for my condition to worsen or for new symptoms to appear on top of numerous others. All because, in my opinion, a doctor had a theory and quite rightly tested for it. However, when that theory came back as false, the investigation stopped. Why? What should have been a good news day, a normal brain scan, was turned into a terribly negative experience. And this has happened of course before, in the two or three previous episodes of whatever this issue is. 

However, the difference back then was that the flare and the symptoms passed. On this occasion, the problem is just as impacting to my life as it was a year ago, and unlike the previous episode around four years ago, I’m a parent now. These issues don’t just pose a risk to me. In summary, it felt like a frigid way to deal with another human being, like breaking up with a teenage level with the words, ‘It’s not you, it’s me.’ It felt like it tells me nothing whilst also having the power to completely shatter my world and destroy my hope. 

Where does this end? So, what will it take for somebody to take a look into my situation again? Speaking with my GP yesterday, it’s clear that neurology is now a dead end. He suspects it’s more autoimmune or rheumatic in nature anyway, that or some form of complex regional pain syndrome or CRPS, although I’ve never heard of that personally. So, after all of this time, it appears I’m back knocking on Rheumatology’s door again, which is ironic considering the last time I saw my rheumatologist in the summer of 2020, he mentioned that my condition, psoriatic associated juvenile idiopathic arthritis, could continue to evolve until I reached my mid-forties right before telling me that the issues I was reporting were neurological. 

As I explained to my GP on the phone, no established cause doesn’t mean no problem. Every day this issue impacts my life when active, far more so than the arthritis I’ve lived with since I was a child. Some days I’m scared to drive, have to set trackers on my phone when I’m walking across fields, carry my son up the stairs on my backside when my foot goes numb, take ridiculous levels of pain relief just to get to sleep some nights when the electric shock sensations in my fingertips are too much. 

So, regardless of established cause, there is a clear and obvious problem. And I sit here today wondering what it will take for somebody to retake an interest and get to the bottom of this once and for all. A bad fall when I break something? A car crash? To be found face down in the mud by another dog walker? Worse. 

[00:13:17] Cheryl: 
Wow. Thank you so much for reading that. I cannot imagine how hard that was to live through and then write about. There’s so much to unpack. First is, you know, the vulnerability that patients, that we face when we are seeing a new doctor in particular, like a specialist in your case, the neurologist. And you were, you could read his reactions as you were sharing your symptoms with him and seeing what he was responding to and what he wasn’t. And can you just share a little bit more with the audience? Like, why are those doctor-patient interactions so challenging for us chronic illness people sometimes?

[00:14:06] Joel: 
Yeah. I like to think I’m quite confident I’ve been in that of those sort of rooms most of my life. But even I found that one difficult. So, I’m well aware that there are lots of people that are not as confident in me in saying those things. And I think there was a couple of things from that situation that stood out.

One was the fact that over the course of 7 to 10 years, I’ve been through that department three times. Once I was dismissed, once the headache that put me in hospital went away that the second time I was basically told it was a migraine, and the third time was this time around. So, I think the first thing that was really disheartening and difficult was that when you walk in and clearly the guy hadn’t looked at the file before, the minute you stepped in the door. 

Like, you know, I have a lot of meetings at work and before every single one I prep for it. It might be five minutes, it might be half an hour depending on what that that involves. So, so I think it’s really disappointing when if people like myself, and I’m sure you as well, you have enough of these consultations, you can tell the ones that have read and the ones that have literally just looked at the top page on the pile of notes that might be this high. So, that was disappointing. 

And then, the fact that nobody had separated the arthritis stuff from the neurological stuff, because for once, like I said in my article, I was able to be looked at in isolation. It’s very rare that I have no active disease, but I’m left in constant pain which is another story. But for once, they couldn’t just pin it on your chronic illness. And I think a lot of us that live with a chronic illness, it’s just so easy for everything to be attributed to that chronic illness. So, you feel like you’ve got to filter the information you give them.

And I felt like that from within about two minutes of talking, because it was so clear he was interested in the pins and needles, the loss of sensation, I get a feeling that my foot is in a bucket of scalding hot water and everything, that was the stuff he was interested in. Whereas in my world, the biggest issue was am I gonna drop the baby? Am I gonna fall down the stairs again? Am I gonna cross crash the car, should I be driving, et cetera, et cetera. And that’s really daunting. And like I say, I consider myself to be quite confident with that stuff.

I know me, I know my history, you know, I’ve lost count how many times I’ve had to tell somebody, “No, don’t put me back on that drug because I had a terrible experience,” whatever that might look like. But I’m well aware that there are a lot of people that are not confident enough to do that, and rightly so because of experiences like that. So, I think even with all of my experience of going through those situations when a guy is sitting in the corner of the room with his back to you, scribbling away, desperately trying to read your notes as you’re talking, you just lose all hope that you’re gonna get any successful outcome, unfortunately.

[00:16:56] Cheryl: 
Yeah. I’ve unfortunately have, I can totally relate. And I’m curious for, for me, there has also been a layer of wanting, not wanting to be seen as like hysterical or anxious. Like, “Oh, she’s just anxious, she’s a hypochondriac.” Do you ever worry about that? 

[00:17:15] Joel: 
Definitely. And I I think anybody that lives with a form of arthritis or autoimmune disease is well aware that what we feel on the inside isn’t always what we can show. You know, I traditionally took a long time to get diagnosed because my inflammation has never shown in my blood, doesn’t show in my white blood cell markers or anything like that. And when I was a child, my joints never blew up. They were never red, they were never swollen. That happens now, which makes my life a little bit easier, which is a terrible thing to say because, but you almost, you almost — I remember being a 14-year-old laying in a hospital bed wishing that there was something I could point to.

And in some respects, getting psoriasis in my twenties made that a lot easier because you could show inflammation in action. And, yeah, and it is difficult. And I think, like I sort of probably hinted at in that article, I was cherrypicking what I gave him. And an example of where that backfires is — it’s not really related, but it is in a little way — and that I’ve recently been diagnosed with a problem with my eyes and I’m now waiting on another referral to see an eye doctor and neurology again, because I went for a routine eye test, told them that I had eye pain when I was moving my eyes, and that with some other things they saw under the microscope has set off all these alarm bells that it might be linked to all of this other stuff.

But I didn’t use that in those conversations because I thought if I mention headache, if I mention eye ache, if I mention feeling nauseous, it’s just gonna be straight down that migraine route again. And I knew with the falls and what was happening with the whole loss of balance and stuff like that, I’ve had migraines on and off most of my life and it’s not involved any of that. It’s not involved sitting here talking to you, feeling like my left foot is in a bucket of scalding water. It’s not involved electrical shocks in my fingertips. So, I withheld that piece of information. And now, a year to 18 months later, I’m going back to hospital again for something I probably should have told him.

So, if that isn’t a an example of how dangerous it can be, feeling really conscious what information you give him, how limited time you’ve got saving the best bits if you like to try and get their attention, it unfortunately doesn’t paint an accurate picture. And therefore, I’m no further forward because of it, I suppose.

[00:19:37] Cheryl: 
Yeah, I totally, totally understand that. And it’s, I’ve had a few experiences where there’s something that I just mention offhand, like, “Oh, well, also there’s this. But what I’m really concerned about is that,” like, actually before I got diagnosed withRA, I was going to all these gastrointestinal people because I had mostly systemic symptoms like unexplained appetite loss and weight loss and fatigue. And I was like, “I had this sprained finger.” But I didn’t really care about my sprained finger. And I was like, well, it’s been almost a year that it’s been sprained, but anyway, I’m going to GI to figure out my stomach. And obviously the classic presentation of rheumatoid arthritis is not one joint hurting, it’s multiple symmetrical. But, and then eventually it did progress to that. But it’s like you don’t know when you’re the patient necessarily. 

Like, even if you’re a savvy patient, you just don’t know what is the most important information. So, it’s a very, like, I feel so much pressure in those kind of appointments. I mean, I just recently had one that I went to a new dermatologist ’cause I was having an itching without a rash and it was the same thing exactly you’re talking about where I’m like, this is, I literally feel like I wanna rip my leg off. And it did feel very, very superficial. Like, it didn’t feel like it was like potentially a neuro, it did feel like it was like an allergic something reaction to like soap or something. And I remember this desperation. ‘Cause I remember the more I was talking, the more I was like, I can just tell they’re looking at the doctor’s, looking at me like I’m like a hysterical woman that I’m just like a hypochondriac. 

And I’m like, I swear, like I don’t wanna be here. Like, I don’t want to come into your office like during COVID and expose myself, like, for no reason. Like, you know, but it’s just, it’s just vulnerable is where it kept coming back to like, you’re so vulnerable. Because even if you’re the most savvy advocate for yourself and had this illness for so long, the power is not in your hands in that interaction, right? Like, for rheumatology, when you’re with your doctor for long-term, you do develop that partnership and that there’s supposed to be, at least in the US, I talk a lot about shared decision making. I’m not sure in England if that’s as big of a focus. 

But when you get referred to these specialists where it’s like a, it’s like an all or nothing deal, you know, that they have this power. So, ugh. Anyway, so much to talk about, but I wanna move on to the results. So, I think people who don’t live with a chronic illness might not understand why, like, how devastating getting, quote unquote, a i brain scan result would be. So, can you expand a little more? I just feel bad making you talk about this horrible experience. I know people listening are gonna feel less alone through listening to your story, so thank you.

[00:22:28] Joel: 
Yeah, no, it’s not a problem. And I’ve never been one. I know some people sort of chase a title, chase a diagnose, whatever. That’s not been my concern. My big concern with this is I’m a parent now. Other people depend on me. My son’s safety is in my hands. And when my hands are doing these crazy things of going numb out with no warning and electric shocks and this sort of thing. So, I’d kind of, after the whole seven years of going backwards and forwards, I’d kind of got to the point where, you know what? I don’t care. I’ll accept whatever it is. Just let’s know what it is, because the important bit for me is treating it. I don’t, I don’t necessarily worry about what it is, whether it’s arthritis or something else. I just wanted to get some sort of treatment. 

Particularly because in the last year I’ve been told I’ve been left with chronic primary pain. It’s called something different, you know, based on your location. So, you guys might call it something slightly different. But I had a flare that the flare went, I’m left in pain. So, on top of being in daily pain, having all of these weird symptoms, I just felt like I needed some answers just to get it treated. So, and I think that’s where sometimes those of us with chronic illness, we get a bad rep because we’re chasing answers, but we’re not chasing answers to add another diagnosis to our list, which let’s be honest, those of us with autoimmune conditions, we tend to have two or three. 

It’s because without knowing it, you can’t treat it. Like, they were chucking me. They might be called it something totally different, obviously, on your side of the ocean. But loads of things like gabapentin and things like this that were knocking me out to the point where I couldn’t, I wasn’t fit to be a father, let alone get up in the morning and drive him to nursery or whatever. So, you know, I had to, once I got that result, I then remember saying to my wife, “Well, I need to come off all this stuff then, because they don’t know what it is.” They’re leaving it. I’m taking all this stuff on top of my biologics, on top of my anti-inflammatories, et cetera, et cetera, and it’s making me lose time with my son, you know, essentially because I was like a zombie sometimes. 

So, I think the, you know, and the other element as well that’s important in my personal experience is just that letter. It was two lines long, you know, it maybe sounded a little bit longer when I read it out, but it was two lines long essentially saying it’s clear, it doesn’t meet what I was looking for, i.e. MS, and therefore no further action. But sending back — and for me, the key bit was sending back if you get new or progressive neurology. So, basically that’s essentially saying to me, this has all gotta get worse before we can look at it again. 

So, and again, it might operate slightly differently in the States, but here very much nobody joins up. So, you’re under rheumatology for this, they say, “Oh, it’s not arthritis, you’re under neurology.” None of them speak to each other. And it’s the same as this new referral to the eye hospital that I’ve now got, they’re gonna have to speak to neurology ’cause they’re gonna want the same images that’s already been taken.

And it is just crazy that you have to be in one pot or another. Why do they have to drop me for then somebody else to catch me? That was the depressing thing. So, because it was so much focused on the MS and I never really felt like that was the case, you know, that was a complete shock to me, that was all his theory based on the bits I told him. So, to basically say ‘It’s all clear, come back when it gets worse’, that just felt like in 2021, it felt like a very backwards thing. But there we go. 

[00:26:14] Cheryl: 
Oh, we’re gonna really break this down. ‘Cause I’m looking at the text right now. The part that actually felt so cold to me — and I do wanna be clear, this is not a case of like medical malpractice. It’s actually like, it’s more insidious than that, right? Like, this isn’t a medical error. This is just literally the system as it is operating how it’s been designed to operate. It’s just an imperfect system. And it needs to be better. But like, you know, we all live in fear of like medical errors and stuff like that. But this is what’s, he’s actually doing kind of the standard protocol. 

But the standard protocol is just, it’s so inhumane. It’s saying, ‘I have not arranged to review Mr. Nelson’. That’s the part that got me. It’s like literally saying like, I listened to you tell me about how you literally aren’t like safe to take care of your child. This is affecting every part of your life. It’s debilitating pain symptoms with no known cause. And but because it’s not MS, I’m not gonna do anything about it or not even do anything about it. I’m not even gonna make an appointment to explain to you. I’m not even gonna take the time to tell you. 

[00:27:31] Joel: 
Yeah. Didn’t even speak to me face-to-face. That’s the crazy thing. Like, you know, to not even tell me about what I could do next or give the opportunity to ask questions. 

[00:27:39] Cheryl: 
That to me is so cold. And again, it’s not his fault that investigations have not established a cause. Okay. You did your investigation, you don’t know the cause, but then just you’re on your own, like —

[00:27:56] Joel: 
And also those investigations were down a very narrow channel as well, so you know when you go to rheumatology that they’re looking at a whole suite of things. It was the fact that he like to be in that room five minutes and he’s already banding around, “Oh, it could be MS caused by your biologics.” Bearing in mind that he could have seen from my face that this was information I hadn’t been given about biologics and I wasn’t aware of it. So, to just randomly drop that before a single test had been done was just mad. 

And then, obviously, you know, with everything that’s gone on the last year, our waiting times over here in the NHS have obviously gone through the roof. And so, you haven’t got a short wait for these scans. And then, for the, I think the results took four to six weeks from the brain scan to come back. So, the whole time you’re thinking, well, what does that mean? So yeah, that was the bit that got me is that you made a decision. Bear in mind at this point, you haven’t looked at any of my notes. You said there was no neurology file. So, based on those few little bits of information I gave you and zero tests you were saying we need to rule out MS. 

Okay, that’s fine. You’ve ruled out MS. But that’s it. I can’t find any evidence of anything else. Well, we haven’t looked for evidence of anything else. And I think, yeah, that was the difficult bit and how it works here is that you literally have to go back to your GP, your general practitioner, your primary care. So, and as I sort of allude to in that article, he essentially said, well, I can re-refer you, but you’re just gonna go through the same pain and heartache. And he was basically telling me, maybe you need to start learning to live with this and that. But I can do that. But it still bothers me that I dunno what I’m living with, I suppose. 

[00:29:37] Cheryl: 
Oh, absolutely. Like, I’m always relating things back to occupational therapy. Sorry. ‘Cause that’s like how my brain was trained. But in occupational therapy we learn and are trained in two different approaches. Like, one is remedial and that’s like, fix the problem, make it better. It’s like if you’re weak, you can get stronger, right? It’s remedial. And then, compensatory or adaptive is like assuming that this problem is not necessarily, is not fixable at this moment or just taking it as it is, like let’s say you have weakness. Can we compensate for that? Can we, let’s say, switch out your everyday items like cups and things to make them lighter so you don’t have to carry as much? Like, there’s always a possibility of a compensatory or adaptive approach of work arounds, life hacks. 

And I think, you know, patients should be given access to a skilled provider to help them with that when they’re so clearly having challenges in their daily life. So, you’re not even being given, you’re give being given neither, right. Because the doctors are the ones that sometimes can give the remedial, the truly remedial. Like, my medication is like pretty much remedial for rheumatoid arthritis in my case, but I still need compensatory strategies for like flareups and stuff like that. 

So, yeah, I just, it’s just a really distressing experience to not have answers. And I think it’s interesting because I’ve actually also had a brain MRI to rule out MS, but it was, I had started having neurological some issues after a car accident where I also got a concussion. So, of course then there’s the confounding variable, but that’s when my rheumatologist said, “Well, you also could develop MS after being on biologics long-term.” And I was like, oh, I didn’t know that either. So, hopefully that’s as good awareness for those, not to be scared of biologics, but just knowing, you know, knowing the risks. 

So, basically, again, you’re left on your own, but with your GP or primary care, what we call in the U.S. and, you know, so you were able to talk to your GP on the phone and so, what did the GP say? Like, you know, just keep driving, keep doing everything you’re doing, or did they give you anything else? Like —

[00:31:48] Joel: 
Yeah, no. So, the weird thing is, and maybe this goes back to how long I’ve been involved with some of these people and how sort of confident I am, it was kind of, well, what do you want? And I normally get that question when I get an infection from biologics. Like, well, you tell us when you need antibiotics or whatever, which also feels a bit odd. But yeah, so essentially he said, there was a couple of things. He said, obviously I can re-refer you to neurology, but this chap was, made it pretty clear that they’re not very interested. Or we could look at ways of manage it, which was something I then went on and embraced on my own. 

So, I went through sort of intensive pain management therapy, group session things. Obviously all via Zoom in the current climate. And that really helped. And then, he said, or you can go back to rheumatology, but they’ve already said it’s not nothing to do with those. And I think I went through like a full grief cycle with this. So, I went through being absolutely raging. And I wasn’t made any better after speaking with him because he was essentially saying, you know, that was kinda, you know, this is above me. And I dunno what direction to point you in. 

And I must admit, after a couple of weeks I did — and  the pain management stuff helped. I spoke to a couple of pain therapists and everything and they were very good at getting me to see that you’ve left with disadvantages most of your life and still thrived and done, you know, things that most people would make excuses for not trying or doing. So, why don’t you start framing it like that? And that’s what I’ve been doing. So, I think I wrote that in February, so literally March, April onwards, it’s been full on intensive pain management, disability adjustment training, basically getting outta that sort of grief rut that you can get into when you feel hard done by or the world owes you something and why have I got something else? 

I think my big concern, however, is that obviously I get referred — these are very, they’re very much like flares. I call ’em episodes or flares. They come and go and every time they’ve come back, they disrupt everything. Like, threaten my job, threaten my, you know, my social. So, everything because of what happens to me and the fatigue as well. I’ve never really got a massive level of fatigue of my arthritis, but with whatever this is completely floors me. So, I suppose that’s the bit that’s in the back of my mind. It’s on its way out now, and like I’ve done the previous two times over the last seven or eight years, I’ll shut up about it and I’ll crack on. 

But I’m well aware that when that comes back again, I’m gonna be kicking myself again that I didn’t push, because this is by far the most, I’ve pushed the most of demanded action, demanded answers, and I’m still left walking away from it because the flare subsides for want of a better word. And I suppose that’s the bit that bothers me is that I’m used to the way my arthritis fluctuates. But I’m never ready for when this comes back, you know, the whole collapse, no work, falling downstairs. The, jst the sheer discomfort of it as well. ‘Cause it’s a very different pain to arthritis. It’s like being electrocuted. 

So, yeah. So, I think that’s the only bit that bothers me. I’m in a very positive mindset now and I’ve sort of made my peace with it again. But when it comes back with a bang, I’m gonna be sitting here again, angry thinking, why didn’t I demand more? But as pain management frames it, you’ve gotta focus where to put your energy. You know, a lot of people talk about spoons. So, you know, where am I putting my energy? And I was wasting so much energy fighting this, fighting the system, fighting, you know, random doctors that it wasn’t doing my other health conditions any good. And my psoriasis was flaring. So, yeah, for now, I imagine that, like, I do manage my arthritis, but I’m no further forward than I was last year or seven, eight years ago, unfortunately. 

[00:35:54] Cheryl: 
Yeah. And in terms of you’re no further forward in terms of understanding the root cause. 

[00:35:59] Joel: 
Or treatment or, you know, because they, let’s say, for me that’s the big one. There is literally, I’m not anything they put me on temporarily. ‘Cause Gabapentin definitely numbed it, so I could still feel the shocks, but it brought the level right down, which was the first big flag that, oh, it’s gotta be neurological because my arthritis drugs didn’t touch it, but this one on a different pain pathway sort of did. But yeah, so I’ve just withdrew all of that now, but at least I know there’s something there I suppose I can go to, but it doesn’t really fit in with having a young family, unfortunately. 

[00:36:33] Cheryl: 
[Intermission ends]
Hi everyone. I’m interrupting really quickly to remind you that this podcast is brought to you by the Rheumatoid Arthritis Roadmap. It’s a comprehensive online education and support program that I created from scratch to help people learn how to live a full life despite rheumatoid arthritis. In the course, you get to learn how to manage everything from physical symptoms like pain and fatigue, to social and emotional aspects of living with rheumatoid arthritis. I even cover the logistics of things like how to track symptoms and how to advocate for yourself in medical appointments. To learn more, go to myarthritislife.net. 
[Intermission ends]

I would love to learn a little bit more about what your experience was like with pain management therapy. Who were the kinds of professionals that that helped you? Was it like in an individual or group setting? Because I think a lot of people don’t even know that pain management is a resource to them. 

[00:37:28] Joel: 
No, no, I’m happy to talk about that. ‘Cause it’s something I’ve been writing about a lot lately because again, it is that hidden  for me, it was a hidden gem and it seems to get a bad rep because people don’t understand it. Like, as soon as people talk about group therapy, I think especially for me, you know, a man in my mid-thirties, you know, we’re not good at sort of processing that and, I think, and we have a totally different perception of what it is to what it is in reality. So, yeah, pain management effectively started when this episode started back 2019, 2020, but I was literally seeing somebody to be assessed, waiting six months, then maybe seeing somebody else.

So, it was very slow burning because of, you know, COVID didn’t help either. But I was fortunate enough. I think it started either late January or early February around the time I wrote that article. So, I was already in the sessions when I got that news, which helped massively. But the way they’d done it was phenomenal. So, it would normally be us meeting up and they tried to encourage you to create a group of people that will talk after the sessions end. You know, it all depends how you gel. And they did a lot of work to make sure it was a right, the right group, which I was really impressed with. So, it involved me having a phone consultation with a pain management physio, another one with a pain management therapist. 

And they’re all just trying to understand, you know, what you’re looking to get from it, et cetera, et cetera, and make sure you’re gonna fit in with the wider group. So, it already felt like so much groundwork had been done before we started. But what impressed me is that, and I had no idea of this, I literally just thought it was people sitting in a circle and complaining about how much pain they’re in. I’ve gotta be brutally honest, you know? That very much stereotypical, but that is how I thought it was gonna be. But there, for every single session, and it was a 9 to 12 week thing where every single week it was half a day, 9 in the morning till midday.

And then, there was a follow-up call afterwards by a clinician to basically go through your private personal goals. But for every single session there was a pain management specialist physio, a pain management occupational therapist, a pain management therapist. And then, every week at some point on one of the sessions, a third party would drop in. So, we had one week an anesthetist come in, which was really fascinating understanding, you know, pain and perceptions of pain. And he sort of gave us a big talk about how sort of like opiates and things like that, and short-term gain, but no real long-term go. And that definitely made me see things differently.

And then, another week we had somebody that was practicing sort of like a form of Tai-chi. Another one that was sort of all around wellbeing and stress management. And it was phenomenal. And it wasn’t just that we got a — sorry, we got massive handbook as well of things to remember. So yeah, totally blew my mind. Totally rewired how I thought in a very short space of time. And it is a cultural thing, you know, over here in England, everything, you know. Blokes talk around the bar and in the pubs and you don’t talk about pain, you don’t talk about mental health. And we are all very closed off about it.

And it was fascinating to understand the science behind it, but also the way they put up in this support network. So, let’s say after each session, somebody would call you and they’d rotate that. So, you had the opportunity to speak one-on-one with the therapist or the occupational therapist. And yeah, it, it just totally changed my perception, and very much around that whole how much energy I was wasting, kicking and screaming about the hand I’ve been dealt in life that I could be putting into managing my condition, being proactive, my son, my family. And it was, it totally changed how I thought about a lot of things and it came at the right time. 

[00:41:32] Cheryl: 
Wow. No, that sounds so wonderful. I had Dr Bronwyn Lennox Thompson on the podcast a few months ago, and she’s an occupational therapist that works in pain management in New Zealand, and she also lives with really bad chronic pain from fibromyalgia. And she talked about the same thing about how, you know, so often — and maybe I don’t wanna put words in your mouth — but as patients, we can get in a mentality, understandably, but the mentality is about finding the way to fix our condition or cure our condition, make it go away. And of course, it’s beneficial for your health and wellbeing to spend some time doing that, right? 

Like, if I hadn’t done that, I wouldn’t have never gotten diagnosed with rheumatoid arthritis and then not gotten treatment. Or in your case, you know, if you never acknowledged that you had, you know, psoriatic induced juvenile idiopathic arthritis, then you wouldn’t have ever gotten any relief. But at some point, if there aren’t any clear answers that are emerging then the energy, if we had like a hundred energy units and we were devoting all a hundred to finding the remedial cure or path, we could think, wait a minute, what if I just kept 30 of those energy units or spoons and use them to continue trying to find the solution or the answer? 

But then, the other 70 on adapting to life as it is, like, what are the possibilities even with this pain? But it’s so unintuitive. I mean, every episode on here, I end up bringing up my favorite book, ‘The Happiness Trap’ by Dr. Russ Harris, who is a psychologist focusing on acceptance and commitment therapy, also known as act. Did they teach any principles of ACT, do you know, in your program? 

[00:43:21] Joel: 
I’m pretty sure that’s in the work, the handbook we got. 

[00:43:24] Cheryl: 
And it just stands for like making contact with the present moment exactly as as it is, and figuring out if you can commit to meaningful action and take action towards your values or that reflect actions that reflect your values despite whatever pain you’re in or despite your discomfort, whether it’s psychological discomfort, physical discomfort, combination of the two or, you know, multiple layers. And that’s been really helpful for me. It frees — it’s been very freeing for me to kind of say, okay, can I, yeah, how can I make the best of this rather than focusing on on how to make it the problem go away. So.

[00:44:05] Joel: 
And I suppose the other thing that I probably should mention from the pain management stuff as well is — and it might be beneficial to anyone sort of listening to this – is it’s a useful exercise, writing down what are the biggest issues with your current situation? Because one of the things I found going through that process is the pain is one element. It was the fatigue, the letting people down, the negative thoughts, the impact on my career, the worry about being a good parent, the worry about being, you know, providing finance for the household, all this sort of thing.

And actually when you’ve dealt with all those other elements, pain really wasn’t such a big deal. But obviously, I think human nature, we make it the be all and end all because it’s so ever present, well, in most situations, so ever present. And a really good analogy they had was like, you’re a bus driver and all of these thoughts are passengers on the bus. And we even tried it of trying to, you know, you had to answer questions whilst everybody was shouting at you and you realized this is impossible. And it’s exactly what happens with me. You know, you’ve probably seen it on my Instagram or whatever. I have an arthritis problem. But that’s the tip of the iceberg.

80% of the issues that follow is what I let that ravel into, you know, with the negative thoughts of mental health and depression or, you know, just general low mood and this sort of thing. So, that’s what it really helped me realize is that all I talk about is pain. If anyone says, oh, what’s wrong? My first word is gonna be pain, but it’s not the problem. The problem is how I then let that make everything else toxic in the conversation. So, I think that’s worth thinking about. And just scribble down, you know, with a little bubble in the middle of, you know, you and then all the things that you wish you could fix. And you’ll realize that pain is probably just a small piece of that.

[00:45:57] Cheryl: 
I totally understand that. And like one of the biggest passengers in my bus is the uncertainty that I get really — in ACT we call it getting hooked or getting it fused with things. So, like, you can get at overly attached to certain thoughts or, like you mentioned, you, oh, am I gonna be able to be a good parent? Like, in my case it would be, that’s definitely one. Or like, what am I gonna do if it gets worse? How do I know if, like, what’s gonna happen in the future? How am I supposed to plan? Like, for a while it was, should we have another, try to have another baby or not? Like, is that the worst idea or the best idea?

You know, so many swirling thoughts. And so, and realizing that like some of them are not solvable problems. Like, they’re not, like there’s not one clear answer, right? And also, that I don’t have to give those questions a huge amount of energy or attention. Like, learning how to continue driving where you want to go, even when your passengers are yelling at you. Like, stop, slow down, turn around, go there. 

[00:47:04] Joel: 
Listen, it was amazing how many of us had that fear of failure that made up a big chunk of that passenger on the bus. You know, that whole, I don’t wanna try something in case I fail, or I don’t wanna do this in case I let somebody down, or I don’t wanna cancel because of X-Y-Z. And it was, these were all things that we were putting on ourselves that nobody actually around us was saying, you know? And a good example of that is I will often go off sick from work with a pain problem or a mobility issue or whatever that might look like. I guarantee you, if it’s a three day absence, it turns into a five day absence.

‘Cause those last two days will be me thinking I’m gonna get sacked or, you know, my wife’s gonna leave me. You know, these are all terrible, stupid, irrational thoughts. But unfortunately, when you’ve got nothing else to focus on but pain in the situation, your mind goes to those places. And if you can find a way of shutting those passengers out and focusing on what’s really important, and I’m still working on it and I think that’s probably gonna be a lifetime exercise, but it was just something I wasn’t aware of. And I think once you’re aware of it, you can start to try and combat it a little bit. 

[00:48:12] Cheryl: 
One of the things that I liked from my therapist perspective was like, what if you can just — you can turn the volume down on them a little bit, but you don’t even need to worry about what they’re saying. You don’t, or you don’t even need to make them go away or off the bus. They’re gonna just kind of follow you around. Like, another analogy is like the radio station, like radio doom-and-gloom, or radio like you’re a failure, like, playing the greatest hits constantly. Remember that time you messed up? Remember that time you forgot that appointment? Remember that time that you said something really stupid? 

Remember that, you know, and then there’s the, there’s what we try to do sometimes is like drown out the negative radio by being like, let’s just think positive and let’s think about the greatest hits. But the problem is neither one of those is really captures reality and they’re actually just not relevant at the end of the day. We can just kind of say, those are just radio stations playing in the background of my life and I’m just gonna go, you know, do what’s important to me. Do what’s meaningful, do the best I can despite what’s going on with my health. And it’s just a totally freeing experience, I think, at least. 

[00:49:17] Joel: 
And I think the important is for anyone else who’s sort of like early on in that you will fail. You know, you will have days where you completely let those negative thoughts, those negative voices win. So, I think it’s just important to note it is an ongoing relationship you’re sort of working with there. And like you say, it is choosing where to put your energy, and I will never get rid of those. I can have one day off work and I’m thinking I’m getting sacked, which is just stupid, but I’ll never get rid of that. But how much I let it bother me and impact. So, classic example is if I go off sick and then I ring in and say, you know what, can I have tomorrow’s annual leave?

I will go out, I’ll have a good time, I’ll do stuff with my family. If it’s not annual leave, if it’s classed as an absence, I punish myself. I daren’t leave the house. I daren’t go for what he’s on weekly with things I can do. But heaven forbid I have any sort of fun when I’m not at work. And that’s definitely the side of things I’m getting a lot better at. It’s like I don’t have to punish myself if my health fails me, and if there’s something I can still do, then do it. Because I used to be afraid of releasing articles on days I was off sick. Well, why? Because if I’m laying in bed and I’ve got a laptop on my lap, why? Why can’t I? 

So, so yeah, I think it’s really important that, you know, you’re not gonna read a book and wake up tomorrow and be a pro at it. You are gonna have setbacks. It is gonna be one step forward, two steps back occasionally. But I think once you’re aware of it, then you can you can incorporate it into every day, can’t you? 

[00:50:46] Cheryl: 
Oh, absolutely. And I, I think the audience might be wondering, can you tell them a little bit, what is the nature of your work? What kind of work do you do? 

[00:50:54] Joel: 
Okay, so I’m proud to work in NHS. My wife works in NHS as well, but she’s on the clinical side. I’m an IT manager and I actually have my rheumatologist since I was 14. He’s still my rheumatologist today. He sat down with my parents back when I was 14. They thought I had ankylosing spondylitis. Turned out to be the psoriatic element bubbling away. And yeah, had the big talk of with my mum and dad and basically said, you need to get him into a desk job. IT is the future. And I sort of went from technical to management. So, now, yeah, I manage people all day and, yeah, that can be hard work, but I definitely find that since I’ve come out and started speaking about my health a lot more, I’ve got a lot more compassion, a lot more sort of empathy, a lot more, I’d like to think, that’s really helped improve that. 

But yeah, so I think a lot of my issues as well, which compounded this bad news regarding this neurology investigation is, you know, I had a lot of time off sick last year. My treatments were canceled, appointments were canceled. And I think when you work for the National Health Service over here and you’re in your sick bed in the once in a hundred year event, that was COVID, there’s a lot of passengers on the bus telling you that you are letting people down and everything else. So, that definitely made what would’ve been maybe a couple of months, you know, poor health into a lot, lot longer. But I’m definitely trying to make up for it now. But pacing, that was the other big thing they taught us in pain management, I’m definitely trying to pace and not overcompensate for the good days.

[00:52:36] Cheryl: 
Well, and I wonder, ’cause I projecting maybe a little bit of myself here, but it sounds to me like your core personality and your core kind of, I don’t know, ethos for lack of a better word, is like, you’re a hard worker. You wanna do a good job, you wanna be dependable. And this illness, through no fault of your own, has forced you at times to not be able to be as dependable in your work, like, just to put it bluntly, right? Like, you have to take sick leave day when you probably didn’t want to, right? You are not the person who’s out there like, oh, I’m gonna take a sick day, but actually I’m gonna go have some fun with my friends. 

No, like, you are the kind of person that wants to, I don’t know. This is, I’m really projecting myself. I’m going to do everything right, you know? And it can just be so hard when not just related to work, but like social life when your illness makes you have to say no to things you wanna say yes to, or back outta plans last minute. It kind of challenges your sense of self in, in a weird way. I don’t know. Does that resonate at all? 

[00:53:39] Joel: 
Yeah. No, it does. And and I think you’d be hard pressed to find anybody with, especially like juvenile arthritis, who went through those experiences during puberty and everything else, who are not that type of person. And you have all these teams, like your therapy teams and your pain management and your rheumatologist talking about pacing.

But we are just molded in that way that, you know, when you had arthritis as a kid, you had to make use of the good days because your childhood was flashing past you, you know. I’d spend two months in a hospital bed to go back to school and realize like all of my mates had new mates, and you sort of had to try and find your place in the world.

And I missed the entire year of high school, which was difficult. And I think because of the time of my onset over here, 11-years-old, is when you go to high school or to sort of the most senior sort of school we have. I was going through all these investigations and then also having to go from sort of like junior school to high school, and try and find my place.

So, I think you can’t help but be stubborn, that sort of type of person that does everything 110%, and we know we suffer for it and we know we shouldn’t. And we know we should embrace pace. And I’m getting a lot, lot better at pacing and mainly because of becoming a dad. You know, I can’t afford to get, ’cause basically what was happening, Cheryl, before I became a dad. I was getting through Monday to Friday, and spent all weekend in bed. You know, and that clearly wasn’t healthy. 

And then, you suddenly become a father and you realize, well, I can’t, that should be my free time, my fun time. So, I’m getting a lot better at that. But I think it is just the nature of growing up in and out of hospitals with arthritis, which, let’s be honest, back then in the nineties was very much still considered an old person’s disease by a lot of people, especially over here. And you’re sitting in waiting rooms with pensioners and all the posters on the walls are old people. 

And it does make you get a bit old before your time and you want to prove people wrong. And I think that you’ve gotta constantly be aware of it to put the brakes on, because you could be off work for a couple of days and you go back and you go and do five days work in the space of one because you feel like you’ve got makeup for it. 

[00:55:57] Cheryl: 
Totally. That’s difficult. I felt so similar, that I was able to really burn the candle at both ends prior to having a child, you know, and you just, there’s, you don’t have that reliable sleep and those reliable weekends to catch up when you’re a parent. So, I’m really, thank you for sharing about that ’cause it’s a big transition. And I’ve had a lot of women on the podcast, not as many men. So, I think it’s really powerful hearing, you know we often think, okay, yeah, pregnancy and having a small child is hard if, you know, for the woman who’s had to physically carry the child. But it’s really hard for, for the men as well.

I wanna, in respect for your time, ’cause with the time zone, it’s actually bedtime for you. I wanna give you a chance if there’s anything we didn’t get a chance to touch on already that you wanted to share with the audience. Any soap boxes you wanna get on? I welcome all soap boxes. 

[00:56:57] Joel: 
I think just, I know I’ve touched upon it a couple of times, but just for people listening to this, don’t be afraid to share your experience in these conversations with medical people and give them the big picture. I think things are really improving here with the link between physical health and mental health and everything else. But some of my best outcomes from these, and they are difficult conversations because you get a very short amount of time to try and pull your heart out and get across what the impact is. But don’t be afraid to do that. Don’t be afraid to explain how it’s impacting your family, your relationships, your jobs, your financial security, et cetera. 

And it isn’t all about test results, swollen joints, and, you know, the obvious bit that hurts. It’s about far more than that and the world is now sort of waking up to that. But yeah, don’t be afraid to do that. And don’t be afraid to ask questions and ask to be involved in the decision making because clearly I had a really bad experience with this one. But it probably does a disservice for all the excellent experiences I’ve had with my rheumatology team, where I have sat there crying in their room and I have explained to ’em how I’d lost my job because I was too unreliable. And this sort of thing is bad experiences that we all go through occasionally in life with these conditions. So, yeah. Just have the confidence to tell them, you know, not just the cause, but the ripples it causes as well in your life. 

[00:58:29] Cheryl: 
I love that analogy and I am just really grateful that you took the time today to share your story. And I will be including links to your blog and your Instagram in the show notes. But for people who are wanting to just hear, can you tell them where to find you? 

[00:58:47] Joel: 
Yeah, so you can find most of my writing, and ramblings, and podcasts and everything else, on joelversusarthritis.co.uk. And that’s J-O-E-L, V-S, and then, arthritis. All one word. And I’m also on most social media platforms at Joel Vs Arthritis as well. 

[00:59:04] Cheryl: 
No, and there’s an amazing campaign for those of you in the US might not have heard about it, you know, from Versus Arthritis, a nonprofit in the UK that does a lot of really wonderful advocacy and awareness work. So, that’s a good — I’ll put a link to that as well. But thank you so much again. 

[00:59:22] Joel: 
Thank you for having me. It’s been an absolute pleasure. 

[Ending note]
Thank you so much for listening to another episode of the Arthritis Life Podcast. This episode is brought to you by the Rheumatoid Arthritis Roadmap, an online course that I created from scratch to help people live a full life with rheumatoid arthritis, from social and emotional aspects of coping with rheumatoid arthritis to simple physical strategies you can use every day to manage things like pain and fatigue. You can find out more on my website, myarthritislife.net, where I also have lots of free educational resources, videos, and more.

Thank you so much for listening to another episode of the Arthritis Life podcast. This episode is brought to you by Rheum to THRIVE, an educational program I created from scratch to help you go from overwhelmed to confident, supported, and connected in a matter of weeks. You can go through the prerecorded course on your own, or you can take the course along with a support group. Learn more at the link of my show notes, or you can always go to www.myarthritislife.net. And if you like this podcast, I would be so honored if you took the time to rate and review it. I also encourage you to share it with anyone you know who might benefit from it. 

I also wanted to remind you that you can find full transcripts, videos, and detailed show notes with hyperlinks for each episode on my website, www.myarthritislife.net.If you have any ideas for future episodes or if you wanna share your story or wisdom on the podcast. Just shoot me an email at info@myarthritislife.net. I can’t wait to hear from you.

1 comment

  • […] I was also delighted to be asked to be a guest on the wonderfully hard-working Cheryl’s podcast over at ‘Arthritis Life’ – where we spoke about diagnosis journeys, pain management and living with arthritis. You can find ‘Ep.34 – The Worst Good News: What to do When Test Results are Normal but you Feel Awful?’ on all major podcast platforms, including iTunes and Spotify or listen directly on Cheryl’s website here: Joel Nelson’s Journey | Arthritis Life […]