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Podcast

Progress Over Perfection: Helen Jones on Thriving with Ankylosing Spondylitis

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Summary:

On Episode 159 of The Arthritis Life Podcast, chronic illness coach Helen Jones opens up about her journey with ankylosing spondylitis. She recounts the emotional impact of being diagnosed after initially believing she had a simple back injury and shares how she came to terms with living with a lifelong condition as a young adult.

Cheryl and Helen dive into the often-overlooked mental challenges of inflammatory arthritis, which can sometimes feel harder to navigate than the physical symptoms. They explore mindset strategies and mental tools that have helped them, including approaches from Acceptance and Commitment Therapy (ACT).

The conversation also highlights the importance of balance, such as steering clear of extreme “healthy” habits—like overly restrictive diets—that can add unnecessary stress. Cheryl and Helen share how they’ve learned to set boundaries and overcome the tendency to be people pleasers.

With insights on managing self-talk and practicing self-compassion, Helen offers a refreshing perspective for anyone navigating a chronic illness. Tune in to discover practical tips for embracing progress over perfection and living well with a chronic condition.

Episode at a glance:

  • Helen’s Journey with Ankylosing Spondylitis: Helen shares her diagnosis story, the challenges of managing a chronic condition, and how it shaped her coaching approach.
  • The Power of Balance and Listening to Your Body: Discover how Helen found relief by embracing balance in nutrition, self-care, and daily habits, prioritizing what feels good for her body.
  • Creative and Compassionate Stress Management: Learn Helen’s unique strategies for managing stress, including reframing thoughts, setting realistic expectations, and practicing self-compassion.
  • Practical Tools for Pain and Fatigue Relief: Helen discusses her go-to tools, like hot water bottles and ice packs, and explains how listening to her body guides her choices.
  • Inspiration for Thriving with Chronic Illness: Helen’s mantra, “Progress over perfection,” and advice for newly diagnosed individuals provide hope and actionable steps to live a fulfilling life despite limitations.

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:

Helen Jones 

I was diagnosed with ankylosing spondylitis nearly four years ago after my symptoms began suddenly in my late 20s, following a bout of COVID. Before my diagnosis, I faced relentless pain, sleepless nights, limited mobility, and I saw my brain turn to a much darker place than ever before. Coming to terms with living with a chronic illness forced me to prioritize my mental health, re-explore who I am, what I need and want and build habits in line with this. Now, as an associate-certified life coach, I help others to rebuild their lives with health and well-being as a priority, so they can feel confident and live fulfilling, joyful lives.

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:

Full Episode Transcript:

[00:00:00] Cheryl:

I’m so excited today to have Helen Jones here. Welcome to the Arthritis Life podcast. 

[00:00:06] Helen:

Hi, thank you. Thanks for having me. 

[00:00:08] Cheryl:

It’s so great to talk to you from across the world. So, on that note, where do you live and what is your relationship to arthritis?

[00:00:17] Helen:

Yeah. So, I’m from the UK, but I currently live in Barcelona. And my relationship with it is quite a new one. Three years ago, I was diagnosed with ankylosing spondylitis. For those who don’t know about it, it’s a type of inflammatory arthritis that primarily affects the spine and pelvis joints. But like with rheumatoid arthritis and other ones, it affects the whole body and the impacts can be on all of you.

[00:00:51] Cheryl:

Yeah, that’s a really, that’s a really good way of summarizing it. Yeah, it might, the pain might be in your spine and pelvis, but the impacts are felt in your whole life and your whole body. So, on that note, it’s always great to hear — not great, but it’s always interesting to hear

people’s diagnosis journeys. How you said it was about three years ago, like, what were your symptoms and was it easy or hard to get a diagnosis?

[00:01:22] Helen:

Yeah, it’s, I know everyone’s journey is so different. Mine came after COVID, so I got COVID at the end of 2020 for the first time. And it was after that I started developing a lot of pain in my back and shooting down my left hand side. At that point I was doing a lot of exercise, loads of volleyball and high intensity exercise classes. So, at that point I thought I was just overdoing it. So, I noticed that if I did less volleyball, it wasn’t quite as painful. So, I just stopped doing that exercise. But as the year went on, the pain just got worse and started spreading. It was down my whole left hand side. 

And — I’m trying to remember it. I, as probably a lot of people can relate to before you actually get that diagnosis, it was that I was visiting every physio, osteopath, chiropractor, anyone I could think of that might give me an answer as to what was happening. And then, I was going away and trying all the different exercises and just nothing was improving it. And it was just getting worse and worse by this point. 

Yeah, by this point, I was able to sleep like a few hours each night and then it would get to 2, 3 a.m. and I would just wake up with excruciating pain in it was really deep inside my glute. It felt like glute and down my leg and in my back and I just didn’t know what was causing it and I was trying lots of different things but nothing was getting better and then it got to the stage where I was struggling to even walk very far because of the pain. 

And I remember at the time my friends, who I was living with were like, you were white with pain at times. And I kept pushing through and I kept pushing through. And it got to — because I live in Barcelona, it just got to a stage where it’s so bad that I just rang my parents and was like, I want to come home. And just, it was that natural sort of homing response of just wanting to run home. And, I was 29 at the time, but I just needed to be there. And then, it was when I got home that they were like pushing to go to the doctors, get an MRI referral. And then it was the MRI that showed I had severe sacroiliitis. I never say that word right.

[00:04:06] Cheryl:

Oh, I also find it hard to say that word. Sacroiliitis.

[00:04:11] Helen:

Yeah. Inflammation. Inflammation of the sacroiliac joints. And the guy said to me, this shouldn’t be, we shouldn’t see this in someone your age and we need to refer you to a rheumatologist. Almost because of that, once I had the MRI, because it showed up so clearly, it then, from that, a few months later, various blood tests, et cetera, I was then diagnosed with AS.

[00:04:38] Cheryl:

Wow. So, how did it feel, like, when you got that diagnosis, like, I remember feeling mostly relieved because I had an answer for why I had been feeling so bad. And I don’t know how your doctors explained it to you, but my doctors were like, there’s all these treatments and you’ll probably be feeling better soon. So, I felt very relieved. But I know it can be very different, right, for other people. Sometimes you feel a mixture of relief, but also fear. Like how, did you feel?

[00:05:06] Helen:

Yeah. So, when the pain was so bad, one of my friends had a slipped disc and then had a back operation and similar a few years before. And because of my symptoms, I thought that’s what I had. And all the Googling that I did where I thought I was my own doctor, I diagnosed myself as that.

[00:05:31] Cheryl:

Yeah. It’s good to research what could be going on when you’ve gotten to so many different places and you still don’t know why you’re in pain, but yeah.

[00:05:38] Helen:

Yeah, yeah. No, it is good. But I, think I probably took it, I dunno, maybe I did it too much at the time. Yeah. But I, assumed it was that, and so finding out that it was something I was gonna have, and I’m not saying a back operation is horrible, but I thought it was gonna be something that was fixed.

[00:05:56] Cheryl:

Yeah. Yeah.

[00:05:58] Helen:

Then I felt a lot of fear. I think hearing that it was something I was going to have forever and seeing words like ‘progressive’ and even ‘degenerative’ and things like that really, really scared me because you’re inside your body, you’re in a lot of pain. And my first thought was how can this get worse? And that was a lot of fear, I remember.

[00:06:24] Cheryl:

Understandable. Yeah. Understandable. And. what was that conversation like with the doctor? Like, did they help you get a sense of what your prognosis might be? Or because sometimes they’ll say like, well, we think you’ll probably respond well to these treatments, or other times they’ll say, do you know what I’m saying? Like, they’ll try to give you a sense, but they don’t always, so I’m always curious what those conversations are like.

[00:06:49] Helen:

Yeah, what did, what was the doctor —? They didn’t have much time to really speak to me, and I understand. I understand it. We’re really lucky in the UK with the National Health Service. So, there wasn’t much time to really go into it. They just told me that’s what I had. And at that point there were lots of treatment options available, medications to help manage the symptoms, but there wasn’t an actual cure for it. So, I don’t remember much about what they told me, to be honest.

[00:07:33] Cheryl:

You’re probably in shock, too. Yeah, like my mom was luckily at my diagnosis appointment, so she helped remind me of what was said. I just remember the only thing I took out of it was, this is maybe me just being very optimistic and naive and optimistic, was there’s a treatment that we think will work. And I’m like, give it to me now. I don’t care what else is happening. Like, inject it into my body. Can you put it in now? Like, help me right this instant. But yeah, like, it totally depends on how the doctor, I think, frames that conversation, and the downside of how I looked at it was extremely simplistic the way I looked at it, like, I didn’t really think about it being, like, a progressive condition or long term. I just was like, give me right now what will help me now. And I think that’s about being 21 versus 29. Maybe you’re a little bit more looking at the big picture.

[00:08:26] Helen: 

Yeah, definitely. 20, 21. That’s, at that age —

[00:08:31] Cheryl:

Well, same for 29. And it’s never easy. But yeah, so what are the some of whatever you’re comfortable sharing about, some of the treatments you’ve tried? Not just medications, but I know, you’ve have a more holistic way — and me too — of changing your mental outlook and lifestyle. Obviously, you were very active before as well as medication to support your treatment outcomes. I’m probably, I’m failing, I’m saying words out. Like, tell me about, let me put it this way. Tell me about your treatment journey. There we go. 

[00:09:08] Helen: 

Yeah, I get it. I get it. So, on a medical, the medical side, I, first of all, they did two steroid injections into the joint, which had no effect. And also, I think there was maybe a bit too much, there was so much trauma to the joint that it was actually a really negative thing. But I know for some people that can, I’ve heard of people with AS where the steroid injection actually sorts it out. So, it’s always worth trying.

[00:09:44] Cheryl:

Yeah, I have had one, I’ve had one and steroid injection in my knee and two in my thumb. The thumb’s a really hard one because it’s such a small space. One of the thumb, one worked and the other one didn’t, it made it worse, unfortunately, too. So, it’s hit or miss, literally, like when they’re like stabbing you with steroid injection. But it can, at that initial stage, really help calm the inflammation, but I’m unfortunately obviously sounds like it didn’t work for you. So, I’m sorry. I’m sorry.

[00:10:11] Helen: 

No, it didn’t work. But at the time, I thought it was going to work. So, I was feeling really positive about it. It was almost then when I looked back and I was like, well, it didn’t work. 

[00:10:24] Cheryl: 

Oh, the further the hopes, the further the fall if it doesn’t work, right? Yeah.

[00:10:27] Helen:

Yeah. Was that was the first call. And then, with the health system in the U.K. you then have to try other treatments first before you go onto biologics. So, I was then on etoricoxib, I dunno if you know it, it’s a really strong NSAID, basically.

[00:10:45] Cheryl:

Okay. Yeah.

[00:10:46] Helen:

And so, I was on that for a whole year, which if I could describe it, took the pain from there to there. And definitely enabled me to do a bit more, but it didn’t, it just went from there to there. 

[00:11:02] Cheryl:

So, it went from like a higher level to a medium, would you say, or lower? 

[00:11:06] Helen:

Yeah. Higher to sort of 70%, 80% to 60% percent I think. And, but also taking that for a year, then had quite a bad effect on my stomach and my stomach lining. So, that was also something I didn’t want to continue taking forever. But also, it was just then clear that from the different things that I tried, the next step was biologics. So, then, since then, so for the last two and a half years I’ve been on adalimumab — adalimumab? I’m so bad with all the words, but.

[00:11:41] Cheryl:

Adalimumab. I think I’ve been, I always forget the generics versus the, like —


[00:11:44] Helen:

It’s like the Humira. 

[00:11:46] Cheryl:

Yeah, Humira. Okay. Okay. Yeah, I have not been on that one. Yeah, but it’s a TNF inhibitor. So, it actually is, like you said earlier, that the drugs don’t, they don’t, the drugs can manage the symptoms and don’t cure it. That’s true for the NSAIDs, the non-steroidal anti-inflammatories. They manage the symptoms. 

But the biologics, the only thing to add to that conversation is the disease modifying anti-rheumatic drugs, which are like the traditional DMARDs — like methotrexate, sulfosalazine, plaquenil — and the biologic DMARDs, like Chimera, Remicade, Enbrel, Xeljanz, all of those, they can, they won’t cure the condition, but they can, they modify your immune system’s response so that you can put it into remission, potentially, on those medications. Which, for me, that, that is what my doctor explained to me.

Sorry, I’m going back to my story, but like, that, I think, was where I got excited because I was like, okay, well, I still have this, but if it’s in remission, it’s like, you don’t really have a lot of symptoms, so you can still live your life like how you were before. That’s the promise of the biologics.

[00:12:49] Helen:

And that’s interesting. Because I didn’t actually know that, even now that it — I almost, it’s funny at the start, I, from my own research and things like that, saw remission that was something I could do through my diet and lifestyle, not through the drugs. So, that’s almost good to know.

[00:13:12] Cheryl: 

It is. And, that my statistics are going to come from rheumatoid arthritis for this, but it is much more likely in a rheumatoid arthritis to, quote unquote, ‘achieve remission’ with medications than a non medicated remission, but if you’re right to bring up that point. I get asked this a lot, well, what do you mean when you say remission? Does that mean you’re not on medications? To some people that might be their goal is to strive for like an unmedicated remission for — but realistically for most people, the most realistic initial goal will be to have a medicated remission. Once you can get that, then you can stair step down on them. You can talk to your doctor about stair stepping down on the medications, meaning like, slowly titrate down on how often and how much, depending on the medication.

And then, you can see that this, I know the data for rheumatoid arthritis are that you’re more likely to — it’s ironic — but you’re more likely to achieve a unmedicated remission if you first got a medicated remission. It sounds opposite to what you’d think. But the idea is that the analogy my doctor used, and again, each doctor explains it differently. So, and please let me know if I’m not explaining it right, but I’m pretty confident on this and I’ll put some links in the show notes to, like, validated evidence-based resources. But she said it’s like the inflammation is like a fire in your body and it’s easier to get it if you’re aggressive, like, put a lot of water on it when it’s still smoldering in the early stages. You’re also much more likely to get into remission if you are diagnosed and treated within one year of your first symptom, which unfortunately a lot of us aren’t, right. I wasn’t, I don’t know about you, but I’m trying to remember if you were maybe about a year, or was it less?

[00:15:05] Helen:

Yeah, I was about a year and a half.

[00:15:07] Cheryl:

Yeah. And then also there’s a lot of other factors, you know, family history, age at diagnosis, number of joints involved, stuff like that. But yeah, and remission can certainly be, there are people I know out there who, I know a friend from swing dancing. She has rheumatoid arthritis. She takes her meds every week and she has no joint pain, no fatigue. And she’s out there swing dancing. She’s got kids. She lives a, quote unquote, ‘normal life’ in the sense that she doesn’t have to do a lot of daily management of her condition because the meds just put it into remission. And that’s something — sorry, I totally, this is like, this is a little educational —

[00:15:47] Helen:

It’s really, really useful even for me, so I’m sure for your listeners it is. I love that fire analogy, putting out the fire.

[00:15:54] Cheryl:

I think she — because I actually, because that came out of a conversation where we were talking about switching medications. I was starting to feel, I call it like a simmer, not a flare, but like a simmer. Like, my joints were starting to feel a little stiff in the morning, but I was like, it’s not that bad. And I was minimizing it to her. But she said, I think your biologic isn’t working anymore, could you switch it? Because she’s like, because, or I recommend switching it. She wasn’t like, you have to like voice of God, right? 

‘Cause it’s a, it’s like a joint decision between me and her. But she’s like, basically we’re going, if we wait, I was thinking, let’s wait till it gets really bad and then switch medications. Because then I could, there’s only so many medications out there, right? I don’t want to blow through all of them so quickly. But she said, you’re going to, you’re going to actually — you’re shooting yourself in the foot if you do that because you’re gonna be, you’re letting the fire spread and get too big and then you’re gonna need even more of a response, like more medication to like, reduce that inflammation, so. 

[00:16:58] Helen:

Really interesting. Because what you’re saying is what I’ve been doing. So, you know how I said how COVID was the trigger for me. What I noticed is that every time I get COVID, I then have that whole response again, and or if I come into contact closely with someone with COVID and don’t necessarily develop COVID, I then almost develop the other symptoms for it and the flare that comes after. So, each time this seems to happen, I, the last three months, for example, I’ve had almost a kind of constant flare. And I have been wondering that about my medication and whether it is time that I need to change.

[00:17:47] Cheryl:

Yeah, I think anytime you’re, you know, experiencing a change in how effective your medications have been in your body, it’s a good time to chat with your doctor about that because unfortunately this is something I absolutely did not know — if my doctor told me, I didn’t remember it — that your immune system can alter itself around your medications to work around them, either by creating antibodies or through other kind of sneaky, we have these like sneaky immune systems, right?

They’re very determined to attack our health, previously healthy joints, for whatever reason. And anytime you encounter a virus, from my understanding, whether it’s COVID, whether it’s the flu, your immune system, anytime your immune system is activated, it’s possible for it to turn against your own cells when you have an autoimmune condition.

And I do want to point listeners to, really quickly, Episode 124, I had two, a rheumatologist and a PhD researcher. The rheumatologist also does research, but the researcher is like an immunology researcher, PhD. And they, the episode’s called like, ‘What Do People With Rheumatoid Arthritis Need to Know About COVID-19 in 2024?’ Long title. But the idea is like demystifying and explaining some of these things around the immune system. It’s really good. I have to listen again because they were so knowledgeable that they put a lot of info in there. 

But, yeah, I think what you’re saying about your, one thing that I like that you’re saying that I think it’s a learning point for other people listening is noticing your body’s own patterns, noticing your unique — that’s one of the hardest parts, but most important parts, I think, of living with these conditions is figuring out, like, I can’t tell you how helpful it was when I finally figured out that fatigue or fatigue was triggered for me by sunlight and heat separately. ‘Cause I kept being like, why do I sometimes —? Like, it’s hot, but it’s not sunny; but it’s sunny, but it’s not hot. And it’s worse if it’s both. So, like, in your case, you know that in my case, it’s a lot easier, right, to say, I’m going to try to control my life where I don’t spend too much time in the sun. I live in Seattle, so that’s not hard. But it’s harder when you’re like, okay, well, COVID triggers things. How do you avoid that? Anyway, so that’s, yeah.

[00:20:12] Helen:

Yeah. And you’re exactly right. It’s, with the autoimmune disease, it isn’t a one size fits all, and each person responds differently to the disease in itself, the medication, and the things around them. And that’s exactly what I do with my clients is work on helping them to really understand their own body, what they respond to, and what helps them as well.

[00:20:40] Cheryl:

Yeah. I love that. Yeah. And so, that’s a perfect segue into, I’m actually curious, what kind of work were you doing before your diagnosis and then what work are you doing now?

[00:20:52] Helen:

Yes. So, before, ’cause I moved to Barcelona, before my diagnosis, I was an English teacher working in businesses around Spain, which I loved. And then, prior to my diagnosis, I then had started changing into career coaching and life coaching and working with people in the business sector on their confidence and leadership development. And so, I’d almost started developing that coaching skill. And then, at the same time, this all happened with my diagnosis and arthritis. And then, almost complementing it at the same time, I then started doing all the coaching work on myself. And getting myself through it and getting my head around living with this condition. And then, it was from that, the skills that I learned from my coaching and then my own experience that I then decided actually who I really want to work with is others with long-term health conditions and helping them after they’ve been diagnosed to then almost rebuild their life with this new normal.

[00:22:07] Cheryl:

Yes. Yes, I love that. And I think it’s such a deep need people have for that kind of on the ground support of navigating those daily challenges, you know, all the little, there’s so many things that can help, like, the little things add up right in terms of managing your pain and fatigue. But it’s so hard. What I hear a lot from newly diagnosed people, like, in my program. the Rheum to THRIVE program, is that they just don’t even know where to start. So, having someone help you, like whether that’s through like a support group or education program like mine, or whether that’s through a health coaching, like what you do, it’s just, it’s so helpful to have that.

[00:22:43] Helen:

And I, and a big focus of mine is the mental health side and how the things that you can do that you do have control of internally with your thoughts and how you talk to yourself and talk to others around you and set boundaries, all of those things come into it, which I think I did myself during my diagnosis. I did coaching and therapy, and I’m still doing therapy at the moment. And just having that other person to help you and support you through it is invaluable.

[00:23:19] Cheryl:

A hundred percent. Yeah. When you and I connected on social media, I was like, oh, you’re like, you said the magic, the two magic words for anyone connecting with me are like, I’d like to talk about mental health and also an arthritis, or autoimmune conditions. And also like the other one is acceptance and commitment therapy. Cause that’s the one that I really love. But, we’ve talked about that. Yeah, it’s so helpful, right? But yeah, you had said, I really liked what you said to me, you said like, you felt prepared, to some degree, when you got diagnosed with ankylosing spondylitis, you felt prepared for the physical parts of it. But the mental have been much harder. And I was like, wow, I agree. That is very true. 

And so, can you tell me a little bit more about that? Like, what does that look like for you in terms of one of the things you also said, like priming your brain to remember what you said.

That’s what I have to do to myself. It’s like, avoiding toxic — find that balance between, you don’t want to have toxic positivity, but you also want to maintain optimism. And, you want to allow yourself to feel space with, to feel your emotions without getting like stuck in them.

How has that looked like for you? Or whatever you want to say about that.

[00:24:36] Helen:

Yeah, no, it’s definitely the thing, as you just said, that when I was diagnosed, I was like, right, this is the physical side. This is what I’ve got to do. And it was with time that I started realizing that the thing I really needed to get my head around is the mental impact. And it started off with, I think getting that balance is, it’s tricky because you do want to try and be optimistic and hopeful. But I totally agree that you really don’t want to move over to the toxic positivity side because it almost just, your brain isn’t stupid. It feels fake. If you’re talking, if it’s just too positive, your brain’s like, wait a sec. 

And when I was first diagnosed and during the whole time I’ve been living with it, I’ve experienced some really uncomfortable emotions like grief, fear, sadness, and even anger at times as well. Some really, really difficult, uncomfortable emotions. And you mentioned ACT there, Acceptance and Commitment Therapy. And that, what that does is actually helps you to allow those emotions and process them, and actually create space for them in your body rather than fighting against them and trying to avoid them. And yeah, if you try and bypass your difficult emotions, they’re going to catch up with you somewhere. Somehow, they’re going to let it be known that they’re there, you know?

[00:26:17] Cheryl:

Yes, sorry, I was just going to hold up. This is my favorite book that I recommend, my favorite nonfiction book, ‘The Happiness Trap’, the updated version by Dr. Russ Harris, because it is so, it’s so, he writes beautifully. And I don’t know what this would have been like for me to understand ACT if I hadn’t already been through therapy with a therapist that also worked from an ACT framework. So, but I feel like this book for me, I think, really helped me understand that because it took me a long time. It took me repeated, like, people had to say it, like, my therapist and Russ Harris had to say it, like a bunch of different ways before I could really understand it. Understand that, like, uncomfortable emotions are not bad, they’re just uncomfortable. And it’s okay to allow yourself to feel them. 

But I’m like, but what if I just want to feel happy? Can’t I validate that thought? Can I just validate that I want to feel happy and just do that? And they’re like, that’s a valid thought. Is it realistic though? I don’t know. Maybe, if I try. That’s the stubbornness. I’ll try really, really hard. Maybe if I’m really, good at it. Like, huh. You can try. Come back to me after you’ve tried. Tell me how it works. So, you need that tough love sometimes.  

[00:27:28] Helen:

Definitely. And you put that really well. It’s that chasing of happiness that, you want that, you’re craving that, but and you think that by chasing that you’re going to be able to avoid those less attractive emotions. And yeah, allowing yourself to actually feel them and trust that they are ultimately just sensations in your body as well. And yeah, engaging with that and realizing that they’re okay can really help them to not feel as powerful.

[00:28:07] Cheryl:

Yeah, was that also hard for you to learn or did you just get it? Because sometimes I do talk to people who are like, they’re like, oh yeah, it just made sense to me. Like, ACT made sense to me. ‘Cause I’m like, it didn’t at first. I was like, why are you people settling? Like, why are you saying it’s okay to feel crappy? Like, I don’t get this. I actually, like, called my therapist, like, a sadist. I’m like, what is wrong with you? How do you do this job? Like, and he’s like an OCD specialist, actually, and actually it really works with that, because you’re saying you can’t control the compulsion. You cannot. You can’t control the thought in your head, the compulsive thought that says, like, wash your hands, or go touch the doorknob five times, or whatever it is.

I don’t have OCD, but when I’m triggered with my anxiety, I do, I get into like repetitive thought patterns that are similar. According to him, it’s not OCD. But long story short, that analogy helped me understand it. It’s like, oh, they’re never going to get rid of that thought. They have to just accept that thought is there and then stop the behavior. That’s what you can control, is the behavior, you can’t control the thought. And I was like, okay, if I use that as an analogy of like, I can’t control that I feel anxious sometimes, I can’t control that I feel grief or anger, but I can control, like, my behavioral response to that, or even like, at a meta level, like, you can’t control your thoughts, but you can control how you think about your thoughts, like, I can control my metacognition and my thoughts about my thoughts. And so, that, anyway, if that’s helpful for anyone. But for me, the question for you is, was this intuitive for you or was it hard for you to understand this?

[00:29:42] Helen:

Almost both. So, it was intuitive for me to understand because I actually saw it in action. I did it. I did what I was being told to and did the practice and exercise. And I, through doing it, saw how sitting with those emotions and allowing them and actually almost like engaging with them rather than avoiding them, which is what I’d done before it. It worked. It helped them feel less scary, less daunting. And actually allowed them to pass quicker. Which yes, in itself is saying that, by wanting them to pass quicker, maybe I’m not fully comfortable with them still, but —

[00:30:32] Cheryl:

You’re right, it’s — oh sorry, you go on. 


[00:30:33] Helen:

No, no, you go. 

[00:30:34] Cheryl:

Well, I’ve asked my therapist this, too. So, he says — he’s a psychiatrist actually, who does psychotherapy, which I didn’t even know. I thought a psychiatrist just did medications. But anyway, he said that it’s okay to, this is my interpretation is what he said, it’s okay to notice that over time when you allow versus avoid or try to submerge your emotions, it’s okay to notice that they pass quicker. What’s not helpful is when you do an exercise with the explicit expectation that I’m doing this so I can feel better. It’s the idea, I’m doing this so I can feel, period. Like, in that moment, you have to be willing to open yourself up to discomfort. I think that’s the difference between you and me. And from what I understand, from what I understand is there’s this idea of willingness in ACT, that the person has to be willing to truly open up. And that took me, that’s what took me a long time. 

Like, I was half-assed, sorry for that phrase, but I was half-assed doing the exercise. I wasn’t willing to truly do them because I didn’t really believe they would work. And it wasn’t until I actually committed. That’s like Acceptance and Commitment, you have to actually commit to doing it. I was like, okay, I’m doing this because I want to feel better. And this therapist guy tells me I should do it. But it’s like, you have to be like really open, like, open your mind completely to it. I was a little too stubborn at first. So, I think you’re a beautiful testimonial to when you truly do the exercises, then, and you experience, then you experience it. So, yeah, you experienced the benefits.

[00:32:08] Helen:

I, would say yes. But then equally, I don’t always do this. And so, when I say that I understood, I, depending on the day and the time that I’m doing it, I can really embrace it and be okay with it. And then at other times, I have other days and I’m not there yet. And I just want, I want to avoid it. I want to escape it. I want the quick fix, whatever that is. So, I really recognize when I am doing it and when I’m not doing it.

[00:32:37] Cheryl:

Yeah, and I think it’s so important to normalize that, right? Because I think sometimes things like mindfulness or ACT feel inaccessible to people who are in like a lot of pain because they’re like, well, I, like, that doesn’t feel realistic. Like, how am I supposed to accept this? It’s so hard to say like, yeah, it’s fine. It’s a practice. Like, you practice it and sometimes you, practice is where you make a lot of mistakes and you don’t do things right sometimes and that’s okay. So, there’s like the self-compassion piece, I think, is so powerful combined with ACT, to say like I’m allowing, I’m giving myself the compassion I would give to a friend, versus being judgmental about yourself like, “Oh, I’m failing again.” 

Do you have like an inner critic, like I have an inner critic that’s like constantly being like, you didn’t do well enough or say, like, I know my mom listens to podcasts. My parents were like amazing. Like, the least critical people ever growing up in a way they’re like, “Are you sure you want to work so hard, like, don’t you want to have fun?” Like, they’re literally like, not at all, like, parents that were like, you need to get good grades and you need to do this. It was all like self-imposed. But it’s just my inner, it’s just my part of my brain that wants to be like, judgmental and learning how to be compassionate, the counterbalance, that has been important for me.

[00:33:56] Helen:

Mine is exactly the same as you actually. And I can’t work out where it came from either because my parents were great. And they put no pressure on me at all, but again, the same it, yeah, I’ve definitely got that inner critic. And it’s one that I can definitely get a hold on and it’s about, again, these habits, these practices of becoming aware of what your internal talk is like. And then, like you just said, asking yourself, would I say that to my friend? Would I even say that to an acquaintance? 

[00:34:33] Cheryl: 

Yeah, I love that. Yeah.

[00:34:36] Helen: 

Probably not. 

[00:34:38] Cheryl: 

Would you say it to an enemy? Yeah.

[00:34:38] Helen: 

No, I don’t actually, even someone I didn’t like, I wouldn’t say that to.

[00:34:44] Cheryl:

Yeah. And what I, think, yeah, it’s really fascinating trying to figure out, like, where does some of this stuff come from, I think. I think that, sometimes, my therapist also said like, sometimes it doesn’t really matter. Like, we can go down this rabbit hole of like, why am I this way, why am I that way. And he’s just like, it’s more helpful in his philosophy to be like, It doesn’t matter why it’s there. It’s there. Like, accepting that it’s there. Yeah, and we can change certain things. Like, we can change how we respond to those inner, you know, inner thoughts. But we can’t, like, I know that, like, I feel my brain is somewhat wired towards, like, I’m not wired towards depression, but I’m wired a little bit towards anxiety. And again, the brain is flexible, the brain changes over time. But knowing that about myself allows me to start from that realistic standpoint. And you also said, before we started talking about people pleasing and setting boundaries again, I was like, yes, check mark. I relate to that.

Like, how have you learned to prioritize your needs and overcome, or overcome as a verb, maybe overcoming people pleasing?

[00:35:58] Helen:

Yeah, this, has been a big lesson for me. And again, it’s the common theme that I see with all of my clients as well. I’m not saying it’s everyone, but it’s a really common theme. And, you know, I look at myself not just before my diagnosis, but also since my diagnosis. And I’ve always pushed myself to meet everyone else’s expectations, no matter the impact on my symptoms. And it’s in this really weird way, AS has been this wake up call. And I don’t want to use the word blessing. But a wake up call to me to, I get this physical indicator now where I’m trying to meet everyone else’s expectations and I’m not listening to my own needs. And so, what was your question again? You asked how I —  

[00:36:56] Cheryl: 

Oh, how, like, overcoming people pleasing and learning how to set boundaries, like, yeah.

[00:37:03] Helen:

So, I, almost listening to that and recognizing that actually I was giving — my own body was being affected by the way I was behaving helped, and learn to say ‘No’ and prioritize myself. But then, that was just my behavior. What I then noticed came up was guilt. And so, even if I did it, I would then feel guilty about saying no, or prioritizing my needs. And so, with that, I then had to learn, you know, that the guilt was making — that adds stress. The whole, a big part of managing a chronic illness is managing stress. And people need to recognize sometimes is that internal feeling of guilt or frustration is going to create stress in itself. And that was what was happening with me. So, much so that I almost should have just said ‘Yes’ in the first place, because the ‘No’ wasn’t — you know?

[00:38:08] Cheryl: 

Yeah, I know what you’re saying. Yeah.

[00:38:09] Helen:

And so, then that was the, probably that was the work I had to do more on was reframing how I spoke to myself. So, seeing that when I say ‘No’, I’m saying yes to my own health.

And also, that if I want to be the best friend, daughter, girlfriend, whatever it is that I want to be, then I need to have my own cup filled up and prioritize my own needs so that I can then help and give to others like I want to.

[00:38:47] Cheryl:

Yeah, I think that’s a huge reframe. Saying no to someone else’s needs at times means saying yes to myself. And you have, I think, that the ability to do that is predicated on valuing yourself. And that, if you’re somebody who defines their worth by how you serve and help others, then it’s hard to remember that, like you said, you can’t pour from an empty cup. And I’ve had to learn that so many times, repeatedly. I’m still, I think that’s definitely like a verb for me. It’s like, in terms of I’ve not overcome it. It in the past tense, I’m overcoming it, or learning to live a lot, understanding my tendency. 

And I think every, I think one thing I liked about ACT for me, too, is that recognizing that like there’s a reason for everything. Like, there’s a reason, like your brain is biased towards negative information because it has to do with your survival. So, your brain wants to spend more time thinking about all the ways you could die and the bad stuff versus the good stuff.  And like, wanting to help to please others is a positive, it comes from like a positive place. Like, you care about others, like, yeah, you have to take care of yourself.

[00:40:07] Helen:

It’s — I love that, too. Trying to view brains different ways of just trying to cope in the world. You’ve said it there exactly. You need to really value yourself in order to be able to do this. I think it sometimes, it’s almost been my most painful times, or when my symptoms have been there worse, that it’s really reminded me of just how much I, or how important it is to value myself. And actually, otherwise, if I don’t, it’s this is what ends up happening. So, sometimes when a really bad flare up comes on, it can be a good reminder of this. And I’m like you actually — it’s a constant work in progress. And yeah.

[00:40:59] Cheryl:

Hopefully we always are works in progress, right? 

[00:41:02] Helen: 

Yeah, I guess that’s the point, isn’t it?

[00:41:05] Cheryl: 

Yeah, and I think that’s where coaching, whether it’s in like a group or a one-on-one setting is so normal. It so helps because I think — I don’t know if you find this with your clients, but like one of the universal experiences of like almost everyone that’s come into the Rheum to THRIVE support groups has been everyone feels like they’re doing it wrong somehow and that they’re failing at it like, and not like in a horribly, like, ‘I am a huge failure’, but like they’re hard on themselves and it’s so much easier to provide someone else that compassion, right, that we should be giving ourselves like. 

So, and anyway, I think having someone else remind us, like, be a sounding board. I’ve done that with my business, too. Like, I don’t know about you, starting your own business. I always thought, oh, I would be so good at being my own boss. Like, if I was my own boss, I would do whatever. I thought I was right and that would always be the right thing and I’m like, okay, I see this trend in my life of wayward optimism, you know. It led me to some amazing places; also led me to — I think optimism is good, blind optimism is not helpful. 

So, you have to, like, I’ve had a business coach for at one point, I probably should go back to her because she really helped me because I was like, oh, I’m just, I’m not doing it right. Or everyone else is, like, it looks so easy for them. Why is it so hard for me? I don’t know. You probably, yeah, you obviously have been a business coach, so you probably see that from both sides.

[00:42:30] Helen:

Oh no, but I’ve also had one as well. And I was thinking the same recently, I think, I’d like to go back to a business coach, because you’re right. We see the, we see everyone else’s external, which all looks great. And you can always focus in, everyone is always doing something. So, on other people’s, you can always see all the things that they’re doing right.

And then, we can hear our internal and see our internal and the behind the scenes work. So, we’re never going to be doing as well as everyone else.

[00:42:59] Cheryl:

Exactly. I love that. It reminds me, I wish I remember who said this, but on social media, I once saw someone say, “Don’t compare your outtakes to someone else’s highlights.” Yeah. I’m like, oh, man. Oh, man. That’s so important. Another thing I really resonated with before we started talking, I always ask the people I interview — or not really, these aren’t really interviews or like just conversations, but all my conversation partners for the podcast, I, I always ask, what are you most passionate about talking about related to your journey and chronic illness?

And so, you had had awesome things like what we’ve been talking about. Another thing that you said that really piqued my interest was finding balance, recognizing and avoiding extremes such as obsessive, quote unquote, ‘healthy habits’ that still create stress. That’s like, ding, ding, of my interest area. ‘Cause I feel like half the value of what I do is like reminding people, like, if you make your whole life about doing the perfect lifestyle, things to control your symptoms and you’re miserable, but your symptoms are better, but like, what is the point? Like, ’cause then you’re still miserable. But yeah, what led you to be interested in this area?

[00:44:16] Helen:

So, what, led me to be interested in it was my own — what I did, my own experience, and I fell into this trap of when I was first diagnosed, I jumped into fixing mode. And I look back now and I recognize that this was a real indicator that I wasn’t accepting that I had it. I jumped into this mode of, right, I’m going to fix this. And quite a few people around me praised me for my positivity and my approach to it. And I really believed, at that time, that I was going to fix it. And that I viewed, I visualized this future me as this. And at the time, actually, my therapist asked me this, I described at the time as this version of me who was thriving with AS. And my therapist got me to describe this version of me thriving with AS and basically what I described was a person with no chronic illness. And that’s what I was aiming for at the start.

And so, I did all of the ‘shoulds’. I did the perfect anti-inflammatory diet. I cut out. all sugar, all fried foods, alcohol, all of the things that I knew for me weren’t, were likely to trigger inflammation. I followed, the perfect physio plan, exercise plan, which I actually do really stand by. That was great. I did everything. I did therapy. I did coach. I did all the things that I should do. And a lot, all of that helps, doing a lot of those different bits can help you. But I got to a place where I was like, well, it’s not, fixed. So, I’ve failed. 

And I also think what I recognize now, and I mentioned this earlier, is that behaving like this and doing these things create stress. You’re still, you’re not letting your body fully relax, you’re constantly in this space, this space of fix, fix, fix; and you’re striving for this, as I said, this different person that I kept failing to be.

[00:46:47] Cheryl:

Yeah, I think you’re describing it in a really, to me, really powerful way. And I think it’s a very, almost universal experience, I would say, in that people start off by looking for the fixing mindset. And I really like how you mentioned that it’s also something that societally we get praised for. And there’s really an ableist undertone to all this, and ableism is prejudice and discrimination against people with disabilities or health conditions. I’m not saying you are ableist, I’m saying like there’s a, maybe a, what do they call it, like, the covert or, I forget the right word for it, but, internalized ableism is when you view yourself as less perfect or less worthy because you have a health condition. 

And in our society, it’s like, well, you have one of two narratives to fall into if you have a disability. You’re either inspiration porn, right? Which is where you’re like, oh, you’re in a wheelchair, but you can still play basketball and like conform to able bodied standards. Therefore, you’re going to be celebrated. Or you’re, it’s like, you’re the, what do they call it? Like, you’re the hero, or you’re like the tragic figure. You’re like, oh, everyone should feel sorry for her, ’cause she’s in a wheelchair. And then, you’re like, there’s no room for people who are like, I’m living the best life I can. This is something that it does limit me. I’m not going to be like, I live my life without any limits because of rheumatoid arthritis. 

So, people will — sorry this is a little side note, but people will like, I’ll get interviewed for media stuff sometimes, they’re like, “How did you overcome rheumatoid arthritis, how did you —?” And I’m like, that’s not what I’m doing, I’m living a good life with this condition, like, and it’s just, there’s this — but it’s very counter, it’s like ACT, it’s very counterintuitive for me. Because you’re like, only when you make space for the uncomfortable, do you, are you free

to actually embrace your life with this, right? 

[00:48:43] Helen:

Yeah, and that’s what, that’s why I connected with you and love the work you’re doing is because when I — I didn’t find you when I was first diagnosed. I found you a few years later and when I was first diagnosed, all I could find out there was how to fix, how to cure, how to cure arthritis, how to overcome it and all of these words. And so, that’s what I believed I had to do. And it’s through my own journey that I then came to find a way to actually learn how to live with it, accept it, and enjoy your life in the new normal. And that’s again why I absolutely love what you do and what you say in this podcast. And thank you. It’s such a important perspective to have, I think.

[00:49:35] Cheryl:

Yeah. And I’ll refer people back to the episode with partnering with your doctor. It’s called like partnering with your doctor, but it’s with Dr. Liana Frankel. And, she’s a very, very, she’s from Yale University. She’s a rheumatologist. She’s a prolific researcher and she’s been the president of the Rheumatology Research Foundation and she’s a very well-respected doctor and, you know, she, I like people from the East Coast of the U.S. I don’t know if you know this stereotype but they’re sometimes very like straightforward. Like, people on the West Coast are like passive aggressive, like, kind of they don’t — where she’s like, she’s basically, and the research backs this up, I’m going to talk about medications for a second because I think there is, it’s really a disservice to patients to say that there is some elusive, perfect lifestyle thing that’s going to put your inflammatory arthritis into remission, guaranteed.

That does happen for a small amount of people, whether that amount is 5%, 15%, 20%, there is absolutely — and I’m a gray area person, right? — but I’m gonna tell you for a fact, there is no debate, no confusion in the scientific community in terms of actual research, that number of people who are in a medication free remission is way lower than the number of people who are in medicated remission and good disease activity. The medications that came out in the early 2000s, the biologics, they changed the face of rheumatoid arthritis and ankylosing spondylitis and psoriatic arthritis so much. I have, I’m an occupational therapist. And I have friends who are certified hand therapists that work in clinics and they’re like, we didn’t — like, what happened to all of our rheumatoid arthritis patients? They used to be doing these joint surgeries on the patient’s knuckles that were severely deformed. And after 10 years of living with it, like we don’t see these patients anymore.

At the population level, when you look at a cross section of people who have this condition, these conditions, the number of people in remission and good disease activity is increasing. Statistically, so much higher than ever before. But if you look on social media, we get into these filtered informational bubbles. And then, and again, I’m not, to anyone listening, I’m open to people’s true experiences who have had experienced a medication free remission. Your experience is true to you. It is, it does not represent what is statistically most likely for the average patient. The average patient is going to need medication to sustain a long-term remission. Like, that is just, a basic fact in the same way that the average person with diabetes is going to need insulin. 

Like, some people can manage with their lifestyle, the majority can’t, with type one diabetes autoimmune type, right? So, sorry long — but that’s just, and with the American healthcare what is happening in our government. It is really, like, I have to manage my stress around that, because it makes me so, it makes me so nervous when we have people in positions of power who are saying, all chronic illnesses are just caused by your lifestyle and can be reversed with your lifestyle. It’s such a disservice to patients whose lives could change so dramatically with these medications.

And, furthermore, you can do both, right? Like, what you’re doing, you’re taking medication, what I’m doing, I take a medication, and I exercise, and I go to therapy, and I manage my stress. Give it all a go. I’m not _ yeah, so sorry. I’m sorry. It’s like every single episode, I’m like, I’m not going to go on my diatribe. And then I do. But, oh, well.

[00:53:16] Helen: 

No, no. I think I brought it up, so.

[00:53:21] Cheryl:

I will put statistics, I will put references in the chat because I do think it’s important to always, like, back up your claims. Like, and again, if, the evidence for an integrative, like a treatment that’s exclusive, that doesn’t have, that is a lifestyle treatment that does not include medication, if that, I will change my recommendation or my outlook when the evidence changes. We cannot make large decisions for large populations of people on the basis of anecdotes alone. You have to look at the broad swath of people, who are diagnosed with these things. 


There actually is, what I believe is, from the data, is a silent majority of people who have AS, psoriatic arthritis, and rheumatoid, who are just living their lives. They’re not, they don’t have Instagram accounts about it, because they’re just taking, like my friend with, who’s a swing dancer, they’re taking their medication, and they’re just doing well. It’s not affecting them. So, they’re not out there counterbalancing these anecdotal stories of people who, you know, it’s all your priority. If you want to try to do it all through nutrition or lifestyle, it’s totally your, it’s your body, it’s your freedom of choice to do that. 

I just think, I don’t mind people doing that if I feel that they have a understood the statistical improbability of that working. If you’re like, I want to be the exception. I could be the exception. It’s true. You could be. That’s what makes me a stressed is the number of people who I think are making that decision based on inaccurate ideas of how likely they are to succeed with that approach.

[00:54:59] Helen:

And they delay treatment.

[00:55:00] Cheryl:

They have irreversible joint damage, and then they regret it.

[00:55:03] Helen:

Yeah. Yeah, exactly. And, just as I said earlier in the podcast, understanding that each body responds, can respond differently. Everyone. And coming back to the thing, you know, I was saying about what I did, once I took off those less, those such extreme measures with everything for me, personally, I almost called it, I called it making decisions that were good for the soul. And after being so extreme with everything, actually, there were days where I’d be in my, I’d be in a flare and then, having some chocolate or going out with friends and having some wine, those things actually overall made me feel better and helped my flare up, or pain, or fatigue, or whatever it was I had that day more than when I’d been so restrictive. And I’m not saying this is then the answer to just do that. It came back to this word of balance. Every time, my underlying value that I follow with my health and well-being is balance. And that is what’s worked.

[00:56:22] Cheryl:

Have you connected to Emily Johnson, Arthritis Foodie? 

[00:56:26] Helen:

Oh, I follow her. 

[00:56:27] Cheryl:

She’s also from the UK.

[00:56:29] Helen:

Yes, yes. I do follow her. I don’t think we’ve actually connected yet, but I know what she does.

[00:56:35] Cheryl:

She’s fabulous. I feel like you two would really connect because she’s also from the UK, but also, she went through the same thing of — and she’s talked about it on The Arthritis Life podcast on Episode 65, but she wrote a beautiful book, ‘Eat Well With Arthritis’, and talks about like the 80/20 rule for when it comes to nutrition and food. And it’s so great. I follow that all the time. Like, 80% of the time eat generally healthy and the other 20% of the time, indulge yourself a little bit. And to me, again, it’s all your personality and knowing what works for you. I know some people are more like all or nothing.

But I find that a much more peaceful existence than, I just, it’s weird. I’m an optimizer in a lot of areas of my life. There’s just something about nutrition. I’ve never been interested in like having the perfect diet. I don’t know what it is. I think it’s, I think, okay, never mind. My story. I think it’s because I have gastroparesis, which is another GI condition already. So, I’m already doing things for that. And I’m like, nope, I’m full. Like, I can’t do one more thing. My brain is full of dealing with that. I don’t want to do some sort of — that’s my life. I have limited spoons and limited interest in, given the also return on investment for diet hasn’t changed my RA kind of at all, personally. 

So, that’s why our bodies are all so different. I went gluten free and I was really excited about hopefully maybe making a difference with my joints. It hasn’t made a difference in my joints for me and my body. I know so many people who it has, but it’s helped my GI tract. So, my GI motility disorder. So, I stay gluten free for that reason. So, you just, there’s so, like, you talked about stress, like, to me, the idea of having any more restrictive diet than what I have right now is too stressful. I’m like, unless there’s actually really strong evidence that’s gonna, like, literally cure arthritis, my arthritis, I’m not really interested. Just, I’ll take my meds. It’s fine. Like, that’s the, we all have to make those trade offs. 

And you got one other thing, I think it’s a beautiful the way that you’re painting a picture of stress management in your life. A lot of times when we say, okay, the way I manage stress is like I do meditation and I do therapy. And you’ve mentioned therapy and you mentioned like you’re altering your kind of reframes and outlook, but you’ve also mentioned these kind of creative, in my mind, like, or less obvious ways of managing stress, like managing your expectations, right? And then it’s like, what, is there anything else before we get to the rapid-fire questions, anything else you wanted to say about how you manage stress?

[00:59:11] Helen:

Oh, yeah, because I think there’s so much out there of physical, how to manage physical stress. And I think people are a lot more aware of physical stress and how that shows up. And you imagine a really busy day or prioritizing rest or exercise, which is also so helpful. But I think what I want people to recognize sometimes is that stress can be created by our internal thoughts and our internal dialogue. And it comes back to that self-compassion piece that we mentioned earlier about, how would you talk to your best friend? Because I’m sure that if you kept talking to your friends around you in the way that sometimes you’re talking to yourself, they probably would run a mile. And yeah, I used to imagine that’s what your brain sometimes is doing inside you and learning how to just be a bit kinder to yourself. I think recognizing that adds to stress.

[01:00:19] Cheryl:

Yeah, that’s beautiful. Yeah, managing your thoughts. That’s huge. Actually, well, that leads me to my next question, which is what’s your best words of advice to newly diagnosed patients? Maybe that’s it.

[01:00:34] Helen:

Oh, maybe that is it. Well, I think to newly diagnosed people, because this is a time in your life where you feel very out of control. And during this time, try and just focus on the little things you can control and that you can do. So, whether that’s — and this comes actually into gratitude as well and focusing on what your body can do for you and actually being grateful for that can really help you to — sorry, you said these are rapid fire questions, this is a really long one.

[01:01:13] Cheryl:

Oh no, they’re never, no, they actually aren’t, yeah. No, that’s, good.

[01:01:18] Helen:

I gave you a very long answer, but basically just really focus sometimes on what your body is doing for you and can do for you, and it can help you to move through this period of time that feel very out of control.

[01:01:32] Cheryl:

That’s beautiful. Yeah, I’ve been doing that a lot lately. What’s my zone of control? When I was talking about the getting stressed about like the state of healthcare in America. I’m like, hey, focus, locus of control. Focus on your locus. Yeah. I love that. Someone said that. I forgot. I forgot who said that. Do you have like a favorite mantra meaning — I’m using that word very loosely — or like inspirational saying or quote?

[01:01:59] Helen:

Do you know what? The one that comes, the one that comes back to me every time is ‘Progress over perfection’ because, and I noticed this again with a lot of my clients and people, so many people are perfectionists and they want to do something to the best of their ability and I think living with a chronic condition in particular, really focus on making the best of their ability. Little bit of progress over actually getting it absolutely perfect.

[01:02:29] Cheryl:

Yep, yep. I repeat that one to myself a lot, too. This is, this one might not apply because there’s less tools or gadgets for AS than there are for RA. For example, because we’re like the fingers and there’s so many little gadgets for that. But do you have a favorite arthritis gadget or tool in your toolbox? Maybe like a heating pad or something or what?

[01:02:48] Helen:

I was just about to say, does a hot water bottle count? Because mine is my hot water bottle. It’s so, the pain in my, because it’s funny, the pain in my, I actually get lots of pain in my hands and feet from AS. And that responds best to ice. But my back and pelvis joints loves heat, so hot water bottle definitely, especially around this time of year. And baths. I love baths. Yes.

[01:03:13] Cheryl:

Oh, my gosh. I think there’ll be a really cute like image for social media where like your hands are on a cold back and your bag is on like a hot pad. And you’re just like, “Hey, you can use multiple temperatures at once to manage.”

[01:03:25] Helen:

Yeah, a lot of the time in the morning I have to lie there with ice packs on my hands and a hot water bottle on my back. Yeah.

[01:03:31] Cheryl:

Wow. That is what your body needs. I think I’m similar. If my hands, I always do the opposite of what the joint is feeling, so if the joint is hot, I put cold, that’s the hot flare. But if it’s like cold and stiff, then I put heat. That’s just my body. But some people are like, I don’t care, I just do heat for everything because it feels good. Other people are, yeah.

[01:03:51] Helen: 

Yeah, I’ve just done it based on what feels good. And I just, it’s like, it’s almost like my brain’s, my body’s cooling for it, so my, I can just feel my hands cooling for ice, and my back is cooling for — yeah.

[01:04:04] Cheryl:

Yeah. Yeah, yeah. That’s good listening to your body. Do you have a favorite movie or book or show you’ve watched recently?

[01:04:14] Helen:

Oh, favorite. It’s hard. I know. I can’t ever pick favorites. I love Paddington. I think, like, I think Paddington is one of my sort of comfort films of just, I don’t know. I just love watching Paddington. So, yeah, I think that’s one of my, if I’m feeling down or just want to, it particularly in like a difficult flare or something like that.

[01:04:41] Cheryl:

That’s like The Emperor’s New Groove for me and the goofy, I’m big into like cartoons. Well we’ve already covered this. So, this is the last, always the last main question is, it’s a big one. What does it mean to you to live a good life and thrive with rheumatic disease?

[01:05:03] Helen:

Listening to my own body and prioritizing my needs along with finding, along with finding some kind of joy or fulfillment with the actual day-to-day life rather than always focusing on where I want to be. So, being present, I guess.

[01:05:27] Cheryl:

I love that. Present, truly present with what’s possible now, not focusing always on making things better in the future. That was like a huge shift for me, too. Well, this has been so great. I knew we could probably talk forever, but we do have to wrap up just time wise, but where can people find — I will put links to all of your, socials and your website in the show notes — but can you just let us know if people wanted to find you like on Instagram? What’s your handle?

[01:05:54] Helen:

Yeah, I’d love to connect with people on Instagram because I also share regular videos trying to just explain like the different tools and tips and things that can help people and also just sharing my own kind of stories that can, I know people have told me, that it’s really helped them to feel a bit less alone. Yeah, my Instagram is @HelenJonesCoaching and my website’s exactly the same, www.helenjonescoaching.com.

[01:06:23] Cheryl:

That’s really smart that you got the same one. I did not do that. Also, TikTok, your TikTok is @HelenJonesCoaching. Yeah.

[01:06:30] Helen:

Yeah. Yeah. I’ve just started going on TikTok as well. So, yeah, same name, @HelenJonesCoaching. So, connect with me.

[01:06:37] Cheryl:

I think it’s — wait, and you’re also a psychologist? Sorry, I’m looking.

[01:06:44] Helen:

My degree, yeah, I studied psychology.


[01:06:46] Cheryl:

Oh, that’s amazing! 

[01:06:47] Helen:

So, that was my foundation, my degree, and then went on to get the coaching. 

[01:06:50] Cheryl:

Oh, that’s awesome. Sorry, I just was getting all these links hyperlinked in the show notes as I, as we’re talking. I’m like that’s so great. Yeah, and I think you know I often get people who I haven’t actually talked with in real time I get these like pitch emails all the time from people wanting to come on the podcast and I’m very picky with who I will accept a lot of these are people that are trying to peddle like a supplement or like something that. They’ve clearly like not listened to the podcast that because I don’t, I’m not interested in that, but it’s not evidence-based. But in your case, I could tell, like, just from looking at your social media, I’m like, oh yeah, she’s, she fits the vibe check of this podcast. So, and I think, yeah, your story is very important for others to hear and you have a lot of wisdom to share. And so, thank you for taking the time today. And sorry for, again, for my little rants, I’m working on, I’m working on that. I’m compassionate for myself, but I also need to like literally stop doing that. So, thank you again.

[01:07:48] Helen:

Yeah, no, thank you. Honestly, I’ve absolutely loved this chat. It’s been great. So, thank you for having me on. It’s been great, yeah. 

[01:07:55] Cheryl: 

Maybe we’ll do a Part Two. And I’m trying to do that with some of the guests I’ve done. I did one Sarah, my very first guest in 2019 before the pandemic, even. And then we did like a five year check in with her this year. Yeah. I’m like, so much has changed. It’s amazing. So, yeah, maybe we’ll do another check in, but for now we’ll say goodbye for now. And hopefully you guys check out Helen’s stuff online and connect to her and we’ll talk to you later. Have fun in Barcelona. 

[01:08:20] Helen:

Bye. Thank you. 

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