Episode Summary:
On Episode 73 of the Arthritis Life Podcast, Occupational Therapist & Researcher Dr. Yvonne Codd sat down with Arthritis Life host Cheryl Crow (occupational therapist and rheumatoid arthritis patient) and discussed the many ways rheumatoid arthritis can change one’s roles in life.
Dr. Codd and Cheryl share specific tips for coping with how an inflammatory arthritis condition (like psoriatic arthritis, rheumatoid arthritis or ankylosing spondylitis) can lead to difficulties adjusting to one’s new role as a parent, in addition to other important roles.
*Celebrating 50,000 downloads of the Arthritis Life Podcast: now through July 15th, enter for a chance to win a Arthritis Friendly Prize Package Giveaway – full details here or at bit.ly/arthritis50
Episode at a glance:
- Research: Review of Dr Codd’s research on how inflammatory arthritis (rheumatoid, psoriatic, ankylosing spondylitis, etc) affects important life roles including parenting
- Becoming a Parent with Inflammatory Arthritis: A conversation about the complexity of asking for help and how it relates to control, grieving, ableism and independence
- Play is important: how to play with your child when you have pain and tips for coming to terms with how your condition affects your ability to parent.
- Why it’s important for health professionals to address life roles, not just symptom management: Dr. Codd explains how occupational therapists help people with inflammatory arthritis participate in meaningful daily roles and activities and bring joy back to their lives
- Dr. Codd’s best advice for the newly diagnosed
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, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist for the next group, which starts in September 2022!
Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis.
Speaker Bios:
Dr Yvonne Codd is an Occupational Therapist and Research Fellow in the School of Medicine, Trinity College Dublin. Yvonne has more than twenty years’ clinical practice experience in rheumatology, vocational rehabilitation, rheumatology service development and clinical research. She is interested in the impact of lifelong conditions on role participation and occupational identity Yvonne’s research interests have focused on understanding and supporting participation and engagement in life roles such as employment, parenting, and relationships in rheumatology conditions. Yvonne has disseminated her research findings through publications in peer review journals and at conferences nationally and internationally.
Cheryl Crow
Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.
Episode links:
- Links to things mentioned in episode or additional listening
- Through mid July 2022 – Arthritis-Friendly Prize Package Giveaway: bit.ly/arthritis50
- One of Dr. Codd’s research articles which we discussed: “My role as a parent, to me, it has narrowed” the impact of early inflammatory arthritis on parenting roles: a qualitative study
- Speaker links
- @YvonneCodd on Twitter
- School of Trinity, Ireland OT page: @tcd_ot on Twitter
- Cheryl’s Arthritis Life Pages:
- Youtube channel
- Instagram @arthritis_life_cheryl
- TikTok @arthritislife
- Arthritis Life Facebook Page
- Cheryl on Twitter: @realcc
- Arthritis Life Podcast Facebook Group
Full Episode Transcript:
Cheryl:
I am so excited today to have Dr. Yvonne Codd on the podcast to talk about occupational therapy and parenting and inflammatory arthritis. Welcome!
Dr. Yvonne:
Thank you so much.
Cheryl:
Oh, no problem. Thank you. Can you just let us know a little bit about you, like where you live and what your relationship is to arthritis?
Dr. Yvonne:
Absolutely. So, Cheryl, I’m joining today from Ireland, I live in Ireland. I currently work across two roles here as an occupational therapist; one in our public health care service working as a clinical occupational therapist, and then I also work as an OT researcher in the School of Medicine in Trinity College in Dublin.
Cheryl:
That’s, yeah, and I can’t wait to delve more into your research. But first, I would love to know, why did you become an occupational therapist? And how did you end up specializing in rheumatology?
Dr. Yvonne:
Yeah, I suppose I was really interested in health care. That’s where I was thinking when I was looking at career choices. And I suppose the life role engagement piece of OT just really captured my interest. I suppose I really liked the fact that we’re so led by the clients that we have the privilege to work with and what their priorities were. So, I knew I would be going into a profession where every person I met would have a different set of priorities and a different set of focus for their sessions. So, I knew every day would be different. And that was why OT hooked me in the first place. And then, from a rheumatology point of view when I was studying, and in my fourth year of my undergrad, I did a rheumatology placement, a 10-weeks student placement. And that was it. It wasn’t planned. I didn’t know I’d love it, but I absolutely did. And I’ve ended up working most of my career within the area of Rheumatology ever since.
Cheryl:
That’s incredible. I mean, it’s such a, it’s a great like, I don’t know what to say, happenstance, or that you kind of fell into it through your internship.
Dr. Yvonne:
I really did. I didn’t, it wasn’t something I thought, “Oh, this is the clinical area for me.” But when I got there, it’s the variety. It’s the variety that comes with it that just kept it so interesting. And I suppose the other thing that happened at that time, which was back in the early 2000s, was that the whole biologics were coming onto the radar. And I suppose the whole landscape of Rheumatology at that time was so exciting, because here are these new drugs that were treating these conditions in a totally different way. And therefore, the potential of them, and therefore the potential for role of OT was just a really exciting time. And I say, I got hooked and ended up spending most of my working career so far working in this area.
Cheryl:
That’s so wonderful. And, you know, I didn’t even prepare you for this question, so, but I’m — if it would be helpful, I think, for the audience to hear, like, what are some common, you know, goals of occupational therapy in, let’s say, people between their 30s and 40s, who have rheumatoid arthritis or similar conditions? Like, what are some of the things that you specifically helped your clients do or achieve? I guess that would be helpful for the audience to know.
Dr. Yvonne:
Yeah, I suppose if you think about that age profile, that kind of 30 to 40 age profile, it’s really often a time when people are kind of settling down into adult life properly. So, they’re really thinking about their career and their job that they do and that they want to do and their kind of career future and how they see their work. And they’re also looking at starting a family and thinking about family planning or having children. So, there are really big elements of occupational therapy for that client group. How, in rheumatoid arthritis, and in any of the arthritis conditions, how maybe those roles are impacted because of the diagnosis and what kind of management and strategies need to be there to guide people to continue to retain and enjoy those roles as they go on through their life course.
Cheryl:
Yeah, that’s beautifully said. And actually, I’m gonna go back even a step further and say, do you have a favorite way to define occupational therapy or, you know, we always talk, at least in the U.S., we talk about an elevator speech, like a quick 60-second or less description. How do you like to explain what is occupational therapy?
Dr. Yvonne:
Yeah, I suppose I would describe occupational therapists as somebody who understands the visible and invisible impacts of an illness or an injury on a person and other things that they need to do and wants to do in their lives. So, occupational therapy is about managing or addressing or treating those visible and invisible impacts, so the person can engage in those meaningful life roles of work, parenting, relationships, social, and leisure roles. But it’s very person led depending on where that person is in their life and in their priorities at that time.
Cheryl:
I love that. And that’s exactly something that I liked about the field as well, is that it’s so individualized because, you know, you might have five patients with rheumatoid arthritis who have the same reported levels of pain or the same joint deformities, but they’re all doing such different things in their life, and their goals and values are different, right? A day in the life looks totally different to each person. So, you’re individualizing your treatment, you’re not just saying, “Oh, here’s the handout of, you know, just the five things you need to do.” Although that — but also the downside of that, it’s a lot of ambiguity. Do you find it stressful at all?
Dr. Yvonne:
Yeah. Yes. But I think you’re right, I do think where OTs are gold — and I am an OT, and I’m a proud OT — but I think what we’re so good at is looking at, yes, those symptoms, but how they impact on function. And therefore, if you’re treating pain, it’s pain in what task or pain to be able to do what task, and if it’s fatigue, it’s fatigue in what task or what role and how to manage the fatigue to be able to enjoy better. So, that’s the piece that I love. Because I think, exactly as you said, three, four, or five people in a row with maybe the same symptoms, but how the symptoms impact on them individually and that functional everyday life, that’s the bit that’s different. And that’s the bit that really brings out the problem solver in me as an OT to think, “Okay, what will solve this problem?” but what will solve it in a way that’s actually acceptable to this person as well?
And also, are they ready to hear this advice, you know, because I think that kind of timing piece around some of the support that we give, you might have the most perfect solution, but it’s not going to be acceptable to that person. And therefore, it’s not the right advice at the right time. And I think we try and we should always be sensitive to that, because that’s going to have such a big impact on whether something is successful or not. And it’s also going to have an impact on whether that person will come back to you again if they have a problem. Because if they feel you get them, and you get what their values are and what’s a no go, or a perfect fit, if they run into the sand with a different difficulty, they’ll say, “I want to talk to the occupational therapist about this now because she or he will know how to meet my needs in this way.” And I like that, I like the challenge of that.
Cheryl:
Yeah, it’s so true. I think there’s a lot of paradoxes in rheumatology, just in general. Like, if you’re really fatigued, it’s actually helpful to exercise. And you’re like, what? That doesn’t make sense, I’m tired, shouldn’t I rest, you know, things like that. And then another paradox is like, acceptance, for me, you know, Acceptance and Commitment Therapy and leaning into acceptance has been the key for me to improve my quality of life. But you’re, and in general, we say, you know, earlier interventions are better. But the early stage when you’re just diagnosed is not the stage when most people are ready to accept fully.
Dr. Yvonne:
I agree. I do agree. I also think early access to treatment is important so at least you can hear a little bit about what’s available and what you can be thinking about. But I absolutely agree with you that flexible approach to services is so key because every person has to go on their own journey. And it’s that right time to hear information is really going to decide how effective it is. So, I think I would very much say early access to intervention, because so often people don’t even know what’s out there. And then they can end up feeling really isolated, because they don’t know what supports, they don’t know that parenting or work or driving might even be something to discuss with a health care provider. So, I think having that on the radar, that this is actually a very valid place to discuss this. And then, come back when it’s the right time is really important as well so that people get the value and service and get the help they need when they need us.
Cheryl:
Yeah, absolutely. Yeah. And I definitely think that we seem to be underutilized, at least in the United States. The vast majority of people I’ve talked to who’ve had significant limitations in their ability to function in daily life, perform life roles like parenting and work, they have never heard of occupational therapy, never been referred to it, and that’s really on the providers. We really have to utilize — the health providers need to utilize a multidisciplinary team.
Dr. Yvonne:
That’s really true. And that’s something I did a study on back in 2018, more related to employment. And what I actually did was I was asking the rheumatology team, “Do you think Work and Employment sits under the scope of Rheumatology?” and they all said ‘Yes’. So, we did a survey and hundreds of participants, and they all said, “Absolutely, yes, this is part of my role.” And I said, “What guides you to ask an employee, a client, about their work and how they’re doing?” And the fundamental, by far, by far, our biggest reason that health care providers asked about work was when the client themselves brought it up. So, healthcare providers know that employment is part of the scope of rheumatology, they also actually, I should say, said it was the role of OT to address this because it would be very much be our practice in Ireland. But the 92% or something said, “I rely on the client to bring it up,” and that’s going to be the decider to whether a work referral is made.
And where that’s really interesting is if you ask a client who’s going in for a medical appointment and they have 15 minutes, work is way down the list of questions when they’re thinking about medication and side effects and symptoms, and all those other things, because they’re going to be top of the list. So, a lot of clients didn’t realize this is the place I should be asking. And if I do ask, I’ll get the help I need. So, that disconnect is a real problem here, certainly. And something that was — I tried to tackle on two approaches, one, brainwashing, the rheumatology team, “You need to ask about work. And you need to ask about work at every appointment.” And I think that’s the same for parenting, which is what we’re more talking about today. You need to ask what roles, “How are you getting on? How are you managing?” and don’t just ask the first time you meet the person, ask them every time they come back for an appointment. And in this other side, I’m trying to tackle it by saying to clients and service users and people with arthritis, life roles, how you’re managing work, how you’re managing home, how you’re managing parenting, relationships; that’s part of you learning to live well and learning to cope and adjust and enjoy your quality of life. So, ask for help and look for support. And at least know that it’s the right place to ask and see what help you can get or what signposting you can get from that.
Cheryl:
Absolutely. I think, another disconnect comes where, you know, people with these kind of chronic conditions, we sometimes end up feeling like we have to just do it all ourselves. So, we just have to suffer, you know. And so, sometimes I think when people maybe have that, maybe they’re on minute 14 of their 15-minute visit. And they’ve really quickly tried to bring it up like, “Hey, I’m having a hard time with work. And I’m really stressed out about it. And I’m frustrated. And I’m sad and I’m struggling emotionally,” and then the provider, the doctor, might pick up on the fact that okay, this person’s having difficulty coping, and let’s refer them to psychology for coping. And I’m the number one fan of going to therapy and going into, you know, getting help with a psychologist and a psychiatrist. I’ve gone to both, love them both fiercely, you know, but it’s like, you’re skipping over this step of helping people not just say, “Okay, this is what it is, and I have to cope with it,” but can we problem solve a day on your life and go through, you know, what does it look like when you wake up? What does it look like when you get your child ready for school? What is it, you know, and that’s our job as occupational therapists. So, as I just described us as a life skill specialist, you know, specializing and helping you function in your daily life. So, little soapbox.
Dr. Yvonne:
Well, I think — yeah, no, no, I’m totally with you. And I think it’s also, it’s not just, “What are you doing? And how are you doing it?” They’re really important. But what’s changed? Because I think that kind of reflective piece tells you how you’re doing because it can become sometimes we’re so busy in the moment that we don’t realize, actually, things are slipping, or I’m actually feeling overwhelmed, or things are hard. And they’re really important pieces. So, I would always say to clients, I would say, “How are you managing,” specifically and asking really specific questions. How are you managing at home? How are you managing the day-to-day things with your family? How is work going? What’s happening from a social point of view or hobby, interest? Because when you ask really explicit questions, then you give the person a chance to reflect and ask back, and then you get the true story.
And I think the other thing that I’m always encouraging clients to do is when they do go for their medical appointments, or go for all of their appointments, prepare for them. And I think I’ve seen one of your TikTok’s about this too. Take a bit of space, take a bit of time to do that, “How’s it going,” and thinking, and maybe write a list because I do think when clients go into an appointment, and they have that piece of paper in their hand, it just gives an element of space, because the healthcare provider sees the paper, they know their questions, and they’re more likely to give time and work through the list. And that also helps anxiety and you feel like you’re leading the appointment. And I think that those kinds of things have a really big impact. Just practical, tangible things that help you have a good sense of where you’re at and what help you might need, and then the kind of confidence to ask and to ask those kinds of participation-based questions as well.
Cheryl:
I love that. I love the — yeah, the I can just hear the occupational therapy throughout what you’re saying, you know, participation-based questions meaning, yeah, when we say participation means, like the actual doing of your life. I remember, one of my professors from Samuel Merritt used to say, you know, that OT isn’t just about talking about it. It’s about the actual doing, you know. I always tried to remember that. But yeah, I want to make sure we talk about the parenting, specifically, because yeah, you have done some really fascinating, I think it would be called qualitative research, right, on the ways that inflammatory forms of arthritis like rheumatoid arthritis affect people’s ability to perform life roles, like parenting. And also, I’m laughing at myself, because I used to go to speech therapy because I couldn’t say ‘R’. And so sometimes when I say a word like roles, I couldn’t say ‘R’ or ‘L’, I have to like focus for a second, like role. Yeah, what are — it’s not about me, this is about the research — so, what are some of the, I would just love to hear more about like, how, first of all, like, how did you perform the research? Like, what did that look like? And then what were some of the themes?
Dr. Yvonne:
I have just lost you for a second.
Cheryl:
Oh, oh, sorry. I hear you. Yeah, and I’m just really curious to learn more about your research on the way that inflammatory forms of arthritis like rheumatoid or psoriatic affect people’s life roles, like parenting. So, can you summarize some of the themes that you discovered through your research? And maybe actually start with how did you even — how do you start with researching this? Like, did you talk to people, or how did the research — how was it; what’s the research methods?
Dr. Yvonne:
Yeah, so I was really interested in parenting because I was conscious that it’s an area that actually hasn’t had a lot of attention in the literature. And what has been looked at is mainly parents with arthritis who have established arthritis, or inflammatory arthritis over many years. And what was out there already was saying that parents who had established arthritis had physical difficulty managing some of the jobs of parenting, which makes sense. But there was really very little out there for those parents who were in the early stage of their diagnosis. So, I undertook qualitative research. I used a qualitative descriptive approach, and I interviewed 24 parents who had a diagnosis of early inflammatory arthritis in their first two years of diagnosis. And the majority of the participants were female. And all of them were parents first and later went on to have a diagnosis of inflammatory arthritis, either rheumatoid, as you said, psoriatic, or undifferentiated inflammatory arthritis. And what I found that I thought was so interesting was that in this study — so I interviewed them, I should have said that. They all, each participant had an individual interview with me, and this was the topic people really wanted to talk about. So, the average interview duration was about 55 minutes, and some people spoke for maybe an hour and 25.
But the findings, the kind of big findings that came out of it were was that parenting with early inflammatory arthritis is quite difficult, very challenging, because of the physical restrictions associated with early disease, and also the psychosocial restrictions with early disease. And that those restrictions had a big impact on altered parenting capacities. And not just the ability to physically do the job, but also the emotional capacity that was needed to parent. And this was something that these parents really felt very, very strongly. And they spoke very much about how, because of that altered capacity, their relationships with their children has often changed. And this is because maybe for some of the participants, they couldn’t do the tasks that they always did for their children, and they had to delegate those roles. So, it was some people spoke about having to delegate to their partner or to their mom or to their friends, needing other people to help to do the job. Some people needed older children to help to do the parenting tasks of smaller children. And this was huge for all of these participants, because they really saw because the relationship, that dynamic change, and they talked about it like a forced role switch. They didn’t choose this, it was put upon them, they didn’t want it. That had a massive impact on these.
And so, for these participants with inflammatory early — inflammatory arthritis, their role identity as a parent was really challenged because of their diagnosis. And that was quite different from those with established arthritis who didn’t see that their parenting role was any different. But for those with early inflammatory arthritis, they really kind of questioned, “Well, if I can’t do these care and nurture roles , if I can’t, if I’m struggling with transporting a child in and out of a car seat and getting them to school or swimming after school, am I really a parent?” And this was something that caused massive hurt, and guilt and worry. And that was something that I thought was really important for us to know as healthcare providers. And also, even in the early stage of this diagnosis, these parents were worried about the future, and they were looking to the future and the type of parent they might be or be able to be, and if they could be a parent. And I thought that was really — because particularly the help thing, I know we’ve spoken about it before, is help a good thing or a bad thing. Because help can be great. But help is only great if you want it. And if it’s a help to you.
For the participants in our study, they felt it was put upon them, and they had lost choice in it. And that was the piece that was so hurtful. And I think for health care providers, you know, we need to really think about this, when we are working with clients. We’re quite good at picking up on the challenges, those physical and emotional, or those visible and invisible challenges as I like to think of them. But sometimes we can hear a person has a lot of support and think, “Great, fantastic. That’s great that they have a really supportive partner, that’s great that they have neighbors who can help. Fantastic.” But if that help is unwanted, then there’s an awful lot of an emotional consequence that goes with that. And I think we need to be sensitive to that and respectful of that when we’re just trying to support a person to parent as they wish and to look at some of the problems, that problem solving that goes with that.
Cheryl:
Yeah, I mean, I have so many thoughts about what you just said, from my own experience. I mean, I had had rheumatoid arthritis for 12 — no, no 11 years, actually 10 years when I got pregnant, and then 11 years when I gave birth. And so, for me, I did — well, you can think that you are prepared, but you’re never really prepared, right, for having a child. Most parents will tell you that, regardless of chronic illness. But I think that one of the first things I thought of when you were talking about this is that like, there’s an old quote I really liked. It’s like, “Happiness is reality, minus expectations.” Meaning like, if you have really high expectations, and then reality doesn’t match those, the more disproportionately high your expectations are to reality, the less happy you are. And I think, so if you — like, for me, I knew I had rheumatoid arthritis, and that that was going to pose likely a barrier, that there would maybe probably be a postpartum flare up. So, my expectations were adjusted accordingly. But still, you know, I’m very stubborn.
I think a lot of people maybe, hopefully, can relate to that. Maybe if not, that’s fine, too. But it’s like, yeah, I know logically that like, I’m gonna have to ask for help. But emotionally, it’s hard. It’s very hard. And it’s a constant grieving process to say, like, this is what, you know, I thought my life was gonna be this way, you know, one way; when I was 20, I got diagnosed. And now, my life is different because of this diagnosis, and I don’t — and if I have to, you know, talking about help, if I have to ask for help, that’s just a reminder to me that I’m not able to do the things that I thought I’d be able to do. And I don’t want to accept that, you know. So, it’s really a continuous grieving process, I think, to say, like, you know, I mean, it’s such an emotional thing to say, like, I don’t even want — I can’t even pick up my own child. Like, it hurts me to hold my baby, like how that’s such a complex, emotional experience. But at least for me, I knew the risks I was taking, because I knew I had rheumatoid arthritis. I do think it’s different psychologically — I know you found this in the research — it’s different with you didn’t even think of this as a possibility, which most people don’t. No one ever thinks that they’re going to get, you know, a chronic illness unless they have a family history, potentially, but, you know, it’s like, I thought that I was making an informed decision to have a child. And I’m just like, assuming that I’d be able to do all these tasks, like, you know, lifting them in and out of the car and everything. And then now you’re, you have to totally, it’s like a whiplash, like, “Wait a minute. I can’t do this the way I planned,” and that’s really scary. So, I don’t know if there’s anything you want to respond in that.
Dr. Yvonne:
Well, I think, you see, I think what’s really important is that, like, I’m a parent, too. I think all parents need help. And I think it’s really normal, and I think it’s really normal for parents to share tasks and delegate and even if it’s a case of you drop him to hurling and I’ll start the dinner and, you know, like that kind of trade off sometimes that we do, or to carpool with other parents, so sharing of tasks. I think that’s a part of survival and the survival rule to parenting for all parents. But for these participants in the study that I did, they almost wouldn’t allow themselves those typical parenting outs, you know, those typical parenting supports, and put so much pressure on themselves to do everything that they, I don’t even know if they always did, but felt they had to retain continuously, and then the burden that comes with that is really huge.
And I think, I think even for us to say, “It’s okay to need help, you know, we all need help sometimes. And that doesn’t mean it doesn’t hurt or upset. But it’s, but it is okay, if that’s what you need,” and I think that the message around that is just really helpful in terms of managing expectations and being a little bit kind to yourself in the process, because parenting is like, it’s learning, isn’t it, all the way through, and everybody’s doing their best. But it’s to try and realize, some things are harder. But sometimes our internal thought processes make things harder as well. And if we can manage some of those internal things, that that can just offload a little bit and, and maybe leave a bit of space for enjoyment and quality of parenting, you know, because I think that was something that some, for some of the parents that were so hard pressed to do everything and be everything within their parenting role that then they could kind of reflect that they weren’t enjoying the engagement piece, and they were missing that joy and fun. And I think that’s something that we just need to think about and not gloss over. Because it is important.
Cheryl:
Yeah, but I think earlier, you mentioned something that resonated to me at least, which is that it’s one thing if you, you know, an able-bodied person decides of their own volition that they want to delegate something, like they’re in control of that, and they know underneath that, that it’s their choice. And if they needed to, they could just do it themselves. But when it’s not your choice anymore, it is a lot more difficult to cope with that. And there’s definitely, yeah, this kind of the way the grief can manifest — oops, I hit my own microphone — the way the grief can manifest is kind of saying, like, this illness has taken a lot from me, I’m not going to let it take this anymore. You know, I’m not gonna let it take my, even like silly things like, you know, I’ve had times where I’ve been bringing groceries in from outside. And I’m like, I know that even if I didn’t have arthritis, I’d be like, “This is too much to carry. Like, this is literally just too much.” But I’m like, I don’t want to do my joint protection right now. I’m annoyed at the fact that I have to, I know I should do this for rheumatoid arthritis. And I don’t want to do it because of that. It’s so funny how our brains are just like not logical sometimes, you know. So, if you’re struggling, I see you and you’re not alone. But what Dr. Codd, said about, you know, it is true that when you stop fighting that need to delegate and you embrace the need to delegate and ask for help, you’re like, it does open you up, and it opens your opens you up for an improved quality of life, for sure.
Dr. Yvonne:
I think it gives breathing space, doesn’t it? It stops the tsunami of feeling overwhelmed, and it’s just trying to adjust and find a new level of normal that’s enjoyable and that’s at a functional level, but that’s acceptable for where you’re at in your life. And that’s changing all of the time as well. But it’s just trying to give yourself a little bit of breathing space with that. Because otherwise, it’s such a hamster wheel trying to fight and do, and fight and do, and not have time for — not even have time for, what was your quote, it cannot pour from an empty cup, you know. So, all of those factors. And it’s just being sensitive to that within yourself, too, is really important.
Cheryl:
Yeah, yeah. It’s funny, I would, I think, that in my own life, there are certain things that I am really good at delegating. It’s almost like I have compartmentalized — like, I am, for example, really, you know, I prioritize my sleep a lot. And so, like when Charlie was younger, I had no problems at all, saying, you know, to my husband, “You always do the bedtime, you know, and I’m gonna go to sleep even earlier,” like you do the, you know, when he was like an infant, when Charlie was an infant, it would be like, you know, we’ll all go to bed, me and Charlie go to bed at like eight and then you do the 11 or 12PM, or AM feedings. And that’s, I don’t mind, I want to sleep, right. But then there’s other times where it’s like, my brain is like, “I don’t want to. I want to do this myself,” you know. So, yeah, it’s like learning how to give yourself almost permission to ask for help, you know, permission to not do everything yourself. And I do think it’s important to kind of reflect on the fact that no human society has ever been completely based on independence. Like, we are a social creature, right? And we rely on community and interdependence. And it’s really kind of like an ableist narrative to say, like, everyone should be able to do everything on their own. That’s never been true, right?
Dr. Yvonne:
Absolutely. And also, I think, too, if you give yourself that space, then you give yourself a little bit of a space to plan options. So, even like what you’ve just said, that you worked out a comfortable fit for you and your husband to manage this little baby who needed nighttime feeds, and that worked and that felt good. Or even, you know, having options in your head and your mind for keeping a little person or a slightly bigger person engaged when you’re really fatigued. And it might be having the box of Lego that’s easy to pull out, or the interesting sticker books, or to say, “It’s okay that we sit down and watch a movie together because — or a little episode or something — because it gives me a break.”
But having a plan for those things, really helps you feel like you’re in control, rather than feeling too tired to go out and kick football and then feeling rubbish about it. So, it’s just trying to think about things per you lead; you’re leading the choices that you have thought about, your child and you as a parent and your combined interests, and what activities can fit within those things for play. Because play is really important. And that came out so much in the research, that was a lot of guilt around play if play was more sedentary now than it was before because of some of those aspects. So, planning play that’s acceptable, that’s within the interests of the children but within your capacity as a person, means that it’s much more enjoyable all around as well. And it’s just kind of, yeah, solving some of those problems again, and then just thinking about in my world, how I like to do things, and what’s going to work for me, and I think that really helps.
Cheryl:
Yeah, I love that. And I, yeah, I definitely had, personally — and just adding my personal details just so people can relate to it, I don’t know if it’s that helpful — but I, you know, I had heard once this little mantra of like, “My child needs me to be present not perfect,” and that’s something I repeat to myself a lot, because it really is true that the most important thing to to a child is is your presence, you know, whether it’s through playing something really active with them, like, you know, kicking the football, or whether it is something more sedentary, like reading and saying, you know, like — also maybe this is helpful to someone — but no one gets the perfect parent, you know, but this is the life that you have, you know what I mean? And there is, I mean, I actually had, probably was closest to perfect, but perfection doesn’t really exist. And it’s you could waste a lot of time, you know, going on Instagram and looking, “Oh, this mom is so perfect.” I’ve even compared myself to another mom with rheumatoid arthritis, Mariah, she’s been on the podcast, and I’m like, oh, I’ve looked at her pictures. I’m like, “She’s so creative with her kids.” And like, I was like a pediatric occupational therapist and like, I didn’t even think of that idea. Like, what’s wrong with me? And we can all do this, right? And luckily, I have all these coping tools because people listening might think, “Cheryl doesn’t seem like she has those thoughts.” I have the same negative thoughts that everyone else does. But I’ve learned how to not be bothered as much by the thoughts, because they’re just thoughts, you know? Yeah. I can cope with that.
Dr. Yvonne:
And is that through conversation with others that you’ve helped that, or is that through your internal processing? Because I do think sometimes people need to talk it out to find a piece that sits with them. Or maybe some people are just good at finding that themselves. But absolutely, I couldn’t agree with you more. It’s about having, it’s having the emotional capacity to parent, is the really — is so important, to be present as a parent. And if you are tired, and if you have a lot of pain, or if you’re feeling overwhelmed with worry and guilt or stress, it’s really hard to have that emotional capacity. So, I think if you can unpack some of those elements to, as I say, have the Lego box beside the sofa and have the kind of interactive books or the sticker books or the special movie that we watched together, that there are options that are not as physically demanding that helps you be present and enjoy. Because it is about, it’s a quality experience. And that’s what we want as parents to give our children and we want that that reciprocal quality experience for ourselves as well.
Cheryl:
Yeah, yeah. You’re giving yourself permission to not be perfect in the moment is such an unburdening experience. Yeah, I do think that getting support from other parents is huge, because, you know, everyone goes through the same feelings of imposter syndrome or feeling like all the other moms know something I don’t know. They all got the manual, I didn’t get the manual, you know? So, yeah, actually, you know, I’m acknowledging that I keep using ‘Moms’ because I am a mom, but you did study both genders, which I think — or sorry, I don’t want to even be binary, but you studied, you know, not just people who identify as female. And I think that’s really incredible that you made sure to do that in your research. So, can you tell me more about the gender differences?
Dr. Yvonne:
Yeah, it was really interesting, the gender differences. And why I was interested in this is there has been a little bit of work done about this before. So, there’s some Scandinavian researchers who have done some work in this area. And they would have reported that there are no differences in how men or women parent. And there is a UK researcher who has done — Caroline Flurey — has done a lot of work with men and arthritis. And she would have said, actually, there are differences. So, I was really interested in the Irish context, and with early inflammatory arthritis, are there any differences, and there were. And there were for a couple of reasons.
Women in this study, were more inclined to consider themselves as a parent in the here and now. So, in the things they couldn’t do in terms of care, nurture, play, transport, all those kinds of roles, and how it made them feel in the here and now. Whereas the men in the study were much more future focused, and they took a much more pragmatic approach to it. And they were really all the time thinking as a parent in the future. And the other thing that was really interesting from the male point of view, or that male perspective that was very different from the female, was that a massive part of the sense of being a parent for the men in the study was that provider part of parenting and providing financial stability to their children and to their family. So, the men in this study really talked about how this diagnosis impacted on their masculine identity to deliver on that provider role, and whether that was something that they could sustain into the future. And that was their focus, mainly, and that was the source of their worry.
And I think that’s really important. Again, I am bringing it back to what interventions we should be thinking about. But if you think about the supports for parenting, we do need to be conscious that not just early and established arthritis might need different types of supports. But men and women might need different supports, because a lot, for a lot of the men, it was around help me stay in work, help me have that career trajectory to deliver on that parenting role. Which is different than women who were looking for support in, how do I make the dinner? How do I manage bedtimes? How do I get them in and out of the car? How can I be a good mom and manage the guilt? And I think that’s really important to be sensitive to. Because the pitch of asking, “How are things going?” from a parenting point of view, it’s different for men and women, or at least that’s what our findings suggested. So, thinking about that when we’re design — asking about parenting, and also when we’re looking at what type of interventions and supports might be helpful for the men and women who are parents.
Cheryl:
Yeah, that that is really, I mean, it’s really interesting. And I meant to ask earlier, you interviewed 24 people, and I think, did you say all 24 were in the early arthritis, like they had been diagnosed within two years of becoming a parent, is that right? So, but you also, did you also interview people who had established arthritis? Or are you comparing these people with early arthritis to other studies? I was just trying to figure that out. Sorry.
Dr. Yvonne:
Yeah, no, so I my study was only early inflammatory arthritis in the first two years of their diagnosis, but I was comparing to what’s out there in the literature for established disease, and what the findings were there. So there’re the differences that I’m kind of highlighting were my research mapped onto, what’s out there, and what some of the differences were.
Cheryl:
Yeah, yeah. No, that’s interesting, because I think some of the things, I would imagine some of them were similar because even if it’s like, I might be used to asking for help, but I don’t necessarily like it, you know, any more. That kind of thing. But anyway, yeah. In terms of — sorry, I just blipped back to that topic — but in terms of the gender differences, it does make sense. That’s just kind of how we’re socialized, you know, to focus on, I think, men are often socialized to really focus on that provider role. So, helping support them in that makes a lot of sense. And I think it’s just, I’m grateful that you even addressed it because I know that a lot of men have told me that, in the chronic illness community, feel like they’re kind of they’re even more invisible, right because they’re not represented in a lot of like the, you know, social media images, right, or the websites. Everything’s kind of all, there’s just a lot more — it’s a vicious cycle, right? Because also, maybe men are not taught or encouraged to share their stories and share their emotions. And so, yeah, but I’m glad that you addressed that in your research. Were the emotional — I am curious if the emotional aspects were similar. And was that, was there anything that, or no?
Dr. Yvonne:
No, they were similar, they were similar. Really, again, it was that guilt. And just so much guilt around being a good parent and the guilt to try and shield children from, and shielding and protecting. That was a really strong theme, protecting children, so that they wouldn’t be aware of the person’s pain or the person with that in their diagnosis, and a worry that went with that. And I suppose all of that was having a big consequence on that emotional capacity all of the way along. But no, I think it was more that men really were thinking, “Well, this is it. And this is how it feels. But what’s it going to mean in the future? And how can I deliver?” whereas women were more inclined to talk about the here and now, and those really practical pieces. But why I thought it was so interesting was that many of the women in this study also worked, and also worked practically full time, but their focus was different, you know. And I think that that’s something, again, it’s just assumptions. It’s just, I suppose it’s that reset to say, don’t ever assume, but ask the question and listen carefully to the answer to hear, because that’s gonna really help inform what might help this person at this time.
And I think it’s interesting, too, that you brought up about men not being represented. In Ireland, an awful lot of the, you know, the literature and pamphlets and stuff that is available can feature older people sometimes who have inflammatory arthritis, which is why I was so thrilled to see your TikTok’s and your Instagram, and to bring that youth and energy and a different way of sharing information, because I just think that’s so important, how people receive information has such a big impact as to whether it resonates with them. If it feels like them, and therefore if they’re going to hear it and do something with it. So, for you, I have to say thank you, because it because I think that those TikTok’s and the fun and yet that really practical things, it just, it’s meaningful. And I think that that really helps open up the conversation too, and when you’re showing how to, you know, pluck your eyebrows with a different type of tweezers, then it’s easier to open up the conversation about grooming and you know, it’s all those different things. So, I think that’s important, too. I think we do need to be kind of creative and how we deliver intervention so that they’re acceptable to the people we’re trying to target so that there’s a greater chance of them being successful.
Cheryl:
Yeah, and that brings back up the, you know, I think there’s a similar barrier to — the barrier, psychologically, to delegating and asking for help is similar to the barrier for using adaptive equipment and assistive devices. And that’s this idea that this makes me, I want to do it myself, I want to do it the normal way — quote-unquote ‘normal’, which I don’t like that word — but, you know, I don’t, I am weaker, or I’m less than if I have to use this. And so, you know, I haven’t actually read a ton on Brené Brown’s work on shame and vulnerability, but I’ve heard her being interviewed on a lot of podcasts. And I think it’s, you know, I credit my parents for raising me to really not have a lot of shame. I’m laughing as I’m saying this because I know what they would say, is that, “You were always like that. We just kind of, we just didn’t get in your way.” That’s what they say all the time. But they did, they did have that unconditional positive regard in saying, you know, like, “You’re not — you do things the way that works for you, you know, you don’t have to conform to what everyone else is doing.”
And so, you might use the example of using like a different style, an adaptive or assistive style of a tweezer for your eyebrow, you know, eyebrows. To me, it’s like, I already don’t really feel a lot of shame about that. But once I started sharing that publicly, I realized how many people said — I mean, just reiterating what you said — but that it means something to them to see someone use it without shame, you know, and they feel less shame now, and so, when they do it. And I need those kind of messages for other things. Like, I needed it for, like so, I was never — I’ve never been too ashamed to like wear a compression glove or brace or something external. But where I felt ashamed was opening up about my struggles with anxiety and mental health. I felt like a huge barrier for that. I didn’t want to admit it; I thought it meant that I was weak. And it was complicated because I had been kind of medically gaslit way long ago before my diagnosis to say, “You’re just anxious, you’re not sick.” So, I was like, I didn’t want to admit that I even did struggle with anxiety, because it kind of felt like it was saying that they were right. But once I saw other people opening up about anxiety, I was like, okay, yeah. And doing it in an ownership way and without shame. I was like, okay, I can do that, too. You know, so, representation is important.
Dr. Yvonne:
Absolutely. There’s a couple of things on what you said, because I think, even before it activates, I think empowering that discussion around tools for jobs and looking at design of products that are out there, be that the car seat, the high chair, the —
Cheryl:
Oh, your audio cut out. Oh, sorry. Your audio cut out, but now you’re back. Sorry. No, no. It’s okay. I think it was rightly said. When you said tools for jobs. Oh, it’s mine. It says your internet connection is unstable. I wonder if it’s because of the construction they’re doing? I’m sorry. Okay. So, let’s just start that sentence again, if you don’t mind.
Dr. Yvonne:
Okay, so I suppose there’s a couple of things, really, in what you’ve just touched on that I think is really important just for people to empower them really to have that conversation. Because if you think about the equipment that you use in your everyday life, the tools for your job. So, for parenting, I’m talking about from the car, to the highchair, to the car seat, you know, to the hairbrush, to all those different components of the tools that you need. And look at the features and the design of them, I’m sure you’ve pushed a buggy that was way too heavy and thought, “What am I thinking,” or tried to fold one up and put it in the boot of the car, or you know, or too many pieces to tray on the top of the highchair. So, I really think having those early conversations around what you need, and how does it work, and try it out, and how easy are these on your joints is really, really important. Like, people buy things because they look great. And they can look great and be really functional too. So, I think those kinds of design decisions and ergonomic decisions can make a task a nightmare, or joy. And I think that’s really important conversation to have.
But I also think the other piece that you said around asking, “How are you doing?” It’s okay, you know, it’s normal to feel anxious at times. How are you managing, and asking kind of elements of the role, “How is the child? How is this going? How is that going?” gives a person space to unpack how they’re feeling. And it means they’re more likely to realize this is coming up in conversation, therefore, this is normal. This is part of the condition. And this is an appropriate place to ask for help and to seek support. And when I’m saying ask for help and seek support, I suppose in Ireland, I’m seeing that from the point of view of the rheumatology services that are there. I’m also talking from the perspectives of some of the charity groups that are available who do an awful lot of online supports and resources. And I suppose the kind of work that you’re doing, where you’re empowering people to learn more about self-managing, but it’s the conversation, “This is okay, this is the same for many of us. And this ebbs and flows at different times as well.” And I think that just like ‘normalizing’ sounds wrong, but yet, I think it’s really right and saying it’s okay to ask this question. And it’s okay to feel like that. And this is a space that we can unpack it and try and look at ways to help you manage, I just think it’s really powerful.
Cheryl:
Right, a hundred percent. A hundred percent agree. Yeah, if no one asks you about something, then the implicit assumption is that it doesn’t matter, you know, it’s like the same with work. If your provider doesn’t ask you about work, then I guess it’s not important, you know. And that’s unfortunate, right.
Dr. Yvonne:
Absolutely. And I also think that the relationship that you have with the people who are having this conversation with is really important. So, that was something that came up in other research that I did, looking at a type of service designed for rheumatology. And there was kind of two sides. I asked the staff and I asked the clients who attended a service about all these roles type engagement pieces. And one of the things that came up an awful lot from the staff point of view was saying, “We ask these explicitly, how are you managing the work home parenting, leisure, how are you managing emotionally because this is the place that we can help you.” And then the other side of that, that I thought was really interesting was the surface users are saying, you know, it depends on the person. It depends on the relationship that you bring. And I remember one person saying you’re not going to go in huffing and puffing to a stranger, but over time, as you get to know each other, and the trust is there, and you feel it’s genuine, then you will share. And I think that’s really, really important, that wherever that support is that it feels like a hammock to give you a lift, because then you will use that space to discuss and to get the help that you need as well.
Cheryl:
I love that. Yeah, it’s so true, you can’t just immediately — well, I guess I’m a little weird, because I kind of sometimes do that. But normally, people don’t just feel like, “I’m going to tell you my whole life story and everything that’s going on in my mind and my emotions right now.” You need time to develop that rapport. So, I love that. And the other thing I wanted to ask you about is something when we were emailing back and forth about this episode, just getting some ideas together, you had this beautiful thought that I’m just gonna read, I’m gonna read from your email. To me, “I think pivoting the conversation about the effects of arthritis on roles and engaging in roles rather than purely symptoms like pain and fatigue is really important.” So, I agree. And can you tell me a little bit more about like how occupational therapists do that, like, how do we move — how have you move beyond just being like, our whole goal is just symptom management.
Dr. Yvonne:
And again, I think it’s coming back to that asking those explicit life questions. Because if I said, or, you know, if I said to somebody who’s coming in for an appointment with an inflammatory arthritis and said, “How are you? How are things?” they’re more likely to say to me, I have pain on my wrists, my knuckles have been really swollen, and they default to symptoms, because I think I suppose that’s can often be the medical context. So, when you default to symptoms, or the expectation is symptoms is what you should be discussing here, that is what is discussed. OTs, bring it back to what’s happening in your life. What do you need to do right now? How are you managing at home? How are you managing getting washed? How are you managing with doing meal preparation? How are you finding driving at the moment? Do any of these things make your symptoms worse? How are your energy levels over a day in a week? And asking those explicit kind of questions around not just the tasks, but the routines that go with it as well helps bring it further from those kind of physical issues and into those activities are those symptoms in function.
And it helps keep the focus on the doing and the function, just to be sure we’re not missing things. Because I know, I know, certainly, sometimes in in therapy, we’re busy, and we kind of would love to go and read all of this, because all of the information is in there. But actually, we know from looking at the research, nobody reads it because it’s too much. And it is just text, and it doesn’t mean anything. But the other thing, so it needs a conversation or it needs a visual or it needs a group discussion, or a video or a TikTok. But the other thing we need to know is that maybe because somebody has managed really well to manage one aspect of their condition, and they have found really good ways to joint protection and pacing and ergonomics and managing their fatigue, it doesn’t necessarily translate into another role that they do. So, if you’re managing home really well, you can’t assume — I can’t assume that you will translate those skills directly into work or parenting and that you might need a conversation to make the connections. And I think that that’s really important. OTs think about that a lot. And they know that it needs to be very specific, what’s the issue in a function, and address it that way.
Cheryl:
I really resonate with that. And I’ve talked to so many people who are almost like they over function at work because they’re so afraid of if they haven’t disclosed their condition, or even if they have, they’re afraid of being ridiculed for poor performance. And so, they over function in some areas. And that I would say I fell on that category. I felt like when Charlie was 11 or 12 months old, I remember telling my husband, “I feel like work is like the only thing I’m good at right now. Like, it’s the only thing I know how to do really well,” including being a wife and being a mom and everything. And so, I really leaned into it I kind of fell. And what was even more complicated because we waited to try to get pregnant till after I passed my board exams while I was totally brand new graduate for OT and we surprisingly, to ourselves, we got pregnant right away, because I was thinking, “Oh, I have all these health issues. It’s probably gonna take a while.” Nope, got pregnant on the first try. So, I got my first job when like four months pregnant. And so, luckily, my employer, Jessica — Jessica McMurray — she’s awesome. And it was a peds clinic, and she’s, you know, she knew. I disclosed I was pregnant. She knew and she was great, and I learned so much I just really leaned in to wanting to be the best pediatric OT. And I felt like I was successful, you know. And so, I was like, I don’t want to lose any time, you know what I mean, in my career because I’ve worked so hard to become an OT. But I really, and it was a bunch of things on top of each other. Like, if my disease had gotten more under control with my postpartum flare up, it would have enabled my function, right, I wouldn’t have needed to accommodate as much. But then, I did have a had some rude awakening. And so, I was like, I can’t. Something has to give, you know, I have to reduce my hours or, you know, I have to give my body some time to reach a new equilibrium and work on my mental health.
And, you know, I started therapy when Charlie was a year old. And I’ve said this, I’ve told this story before, but I’ll just really quickly summarize. He was 13 months old. It was like, I kept waiting until he got to be a year and I had this idea in my head that like, when your child turns a year like, okay, once he’s a year old, it’s like, I’ll have figured it out. Like, that’s the finish line. And then I was very disappointed when nothing magically changed when he 12-months old. And so, my therapist is like — I can’t tell you how relieved I felt when she said, I can’t tell you how many people say that when they come in because I thought, am I even like able to come in here for like, postpartum anxiety and maybe depression, I don’t know, postpartum mood — I call it Postpartum Mood Funkiness, or like postpartum, you know, and she’s like, “Oh, yeah, it’s postpartum. Like, you had a baby. Like, it’s fine. You know, you don’t have — it’s not like it only lasts three months,” or, you know, I forgot what my original point with that was, but just, yeah, learning. Yeah, I was like, yeah, that you can’t transfer one skill to another context. Everything is context dependent. So, I was very functional at work and not as functional in the home environment. And so, I needed a lot of help even though if you took a snapshot of my day from work, you wouldn’t have thought that.
Dr. Yvonne:
And I think something that you’ve touched on is something that OTs are very good at seeing in other people, but we don’t see in ourselves, because that’s human life. But that all outside of the role piece, so those broader aspects that have such a big impact on how we’re functioning. So, you’ve talked about the need for sleep, so important to what capacity you have to be and to do, how you’re managing your own conscious self-care and looking after those things that you have a little bit of space for joy, as I like to say, and if that joy is a cup of tea and a book for five minutes, or to go and do something with your family or not, depending on, but all of those kind of routines and patterns wider than work. That you’re eating while, that you’re sleeping well, that you have, they have such an impact on your capacity. And I think sometimes we’re so focused, like you’ve said, on the doing and doing really well and pressure to do really well, that we don’t realize that we need to kind of mind wider and consider wider. And sometimes those kind of self-management interventions that we will be offering as OTs would be around that wider self-management approach, to be thinking about the wider context, because all of that decides, or not decides, but really impacts on resilience over time and capacity over time, particularly when you’re looking to build capacity up. So, it’s kind of a thing of, we want to just have the tunnel vision, but that’s not sustainable over time. But we need to kind of think broadly. So, that there is, again, there’s less frustration and more enjoyment and pleasure. I think that’s so important.
Cheryl:
I love that. I love that. In prioritizing your own, you know, prioritizing your own satisfaction in life too.
Dr. Yvonne:
Yeah, it’s okay to say, you know, I just need five minutes, or I’m going for a little stroll, or I’m going for a bath, or I’m going. And it’s not even the task sometimes. Sometimes it’s the task, and sometimes it’s the breather. Because I think, parents, it’s that always on, wanting to do well. And, you know, you’ve said it already, but it’s that pressure you put on yourself, the expectation you put on yourself, is a really big thing that I think all parents need to do a little reality check on. But certainly, from the research that I have done, that parents with early arthritis put so much expectation on themselves to be everything and do everything and it’s okay to need help. And I also think expectations from others. I don’t know if that was an experience for you, but sometimes people can say, “You look great,” or, “She never says that she’s in pain,” and that mirror out may not be the mirror in. And that’s trying to manage that a little bit, too. I don’t know. Is that something you found?
Cheryl:
Yeah. Well, it’s complicated. I remember people saying, “You’re doing so well,” like they’re trying to be encouraging. And I wanted to be like, “No, I’m not.” You know what I mean? But I’m like, wait, do I burst their bubble? Because I’m kind of like a people pleaser. Like, do I have the emotional capacity right now to explain to them that I’m actually not, you know, but that’s really more my issue. But in general, the themes that I’ve seen with running my, you know, Rheum to THRIVE support group and programs is that a lot of people, it’s really, you feel like you’re being erased, your experience is erased, because people say things like, you know, “You don’t look sick,” or you, “You look fine,” or I even have like providers, like not rheumatologist, but other providers be like, kind of take a look at my joints like, “Oh, wow, you’re like doing so well because you don’t have like, severe deformities after 19 years.” And I’m like, well, that’s like very, that’s like, it is one visible part. And I’m very grateful that I don’t have the severe deformities, just because they would make life harder for me. But it doesn’t mean that like I’ve had a cakewalk over the last 19 years, you know, especially like managing multiple immunosuppressants during a worldwide pandemic. And, you know, managing that.
That actually has been a lot, you know, harder for me recently is, you know, it’s like when your child’s is older, you know, Charlie’s eight now, then your condition affects them in kind of a different way in the sense of like, okay, well, the world’s like, partly opening up now. But if I still want us to have some of these, you know, precautions like wearing masks and avoiding large indoor gatherings, is it becomes really challenging to know that like, oh, that, in reality, in practice, that looks like deciding, is it worth it to us to allow Charlie to go to a friend’s birthday party that’s an indoor arcade. Yeah, and I love arcades. Like, I love, you know, so we’re having to make these difficult decisions. And it’s really hard to be like, my child might have to, you know, miss out. I’ve come to the point where I accept that I’m going to miss out on things. But it’s harder for me to accept that, you know, my child might miss out or even just our choice to keep him in virtual school. When his school first opened up prior to vaccination, they opened up to in person, and we were uncomfortable with that. But then it’s like seeing his little friends all get to see each other.
And I’m like, oh, you know, so the challenge has changed, I just want to acknowledge that they change over time, you know, that the things that are difficult, you have to take care of your child’s basic needs when they’re little, it’s just do their diapers and do all that, but then when they’re older, it becomes more about, there’s more emotional, complex emotional things, I think.
Dr. Yvonne:
And I think that’s so true. And I think, you know, you’re a parent for life, no matter how old your child is. I’m still very much my parents’ daughter, you know, and you will look to them, or I look to them for, for reassurance or guidance at times, and the emotional needs are more for me now than as a baby. And that whole lifespan of being a parent brings different challenges at different times. And sometimes they are more physically demanding elements. Sometimes there are an awful lot more of those invisible emotional worrying. And I think it’s saying this is, there are different times in your life, different types of parenting support might be helpful to you. And it’s not, like you’ve said, he’s one, it’s fine. I know what I’m doing. And there are different types of different elements to navigate that. I think it is really important to say there’s no way to have it. So, just in my study, I picked parents who were adults, who were parents to children who were 21 or younger, but because I want to kind of see those years where I suppose you really are, you know, your child is reliant on you for a very long time or for all of those elements of parenting. But as somebody who’s a lot older than 21, I’m still very reliant on my parents. And I think that that’s important just to be aware of as well, that parenting never stops. So, the time for support, or the type of support might change over time. And that’s a conversation that’s really important to have, and to look and see what’s available there.
Cheryl:
Yeah, and I’m sorry if — I think I might have I might have said it wrong earlier, because I thought that the people in your study were they had gotten diagnosed within two years of giving birth, but no, they’re within two years — they’re a parent who got diagnosed within two years of the study.
Dr. Yvonne:
So, they’re an adult who had a diagnosis of inflammatory arthritis of two years duration or less, who were parents. They were parents of children from 21 years or less. And they all were parents before they had arthritis. So, I was going to look at some of those layers.
Cheryl:
Okay, yeah, that, then you — because I didn’t realize the children were older. I’m sorry, I obviously didn’t read the full study. This is why you don’t just read the abstract, people, read the whole thing. But because I think that’s even more complicated, because then you actually have a pattern that you establish. Like, this is my parenting routine. And then that snatched away from you, when you suddenly can’t do those things, like versus I had expectations. Like, when I was saying expectations minus reality, it’s one thing to be like pregnant, like, my life might be this way. And then it’s different when the child comes. But when you’re like, no, I already had this, like, I had this down. I had a routine and then you’re like, nope, that routines are not available to you anymore. That’s really hard.
Dr. Yvonne:
And I think that’s why taking help was so forced, and that forced role switch, because it was so unbidden to have to delegate things that you, that were always done before. And that’s why it was so fiercely fought against and caused such upset. And I think that that’s something we do need to think about. And that why I’m saying, just because somebody has help, don’t think, “Fantastic. They have support. How fantastic.” Because, yes, we worry about the clients that we meet who we feel have no support, and we want to do our best for them. But sometimes people have support, it’s they don’t want it, they want to do it themselves. And that’s what your priority is to try and help solve the problems that might go with the environment or the symptoms or the routines that are hamstringing that person to do things as they want to because it has to be personalized. At the end of the day, it’s so important.
Cheryl:
Yeah, no, absolutely. Absolutely. And sadly, I do need to wrap up a little bit. But one of my favorite pieces, or one of my favorite questions to ask my interviewees is about newly diagnosed. Because, I mean, of course, you already did your research on people who are in their first two years of diagnosis, which for a chronic lifelong condition is, you know, newly, I would consider newly diagnosed. So, do you have any general words of wisdom for people who might have just kind of gotten, what one of my students called, like a bomb thrown in their life of this diagnosis?
Dr. Yvonne:
I suppose what — I suppose what I would really encourage anybody who’s just getting this news or in those early years of getting the news is find out what’s out there. Find out what’s available from a hospital provider point of view, find out what’s available within the charity groups that are in your area or nationally, find out what’s there from this community, signposting community support groups that are there. Because, and online as well, of course, well through trusted sources, because you may not want that help right now. But if you know that it’s there, you can go back when you want. And there’s, I often think there’s a little seed that gets planted when you know what’s available, that it might not be the right time, you might need that flexible approach, but you kind of have a sense of where to go back to if you need to.
And then the other thing I have kind of touched on before, but I really think is so important, is plan your appointment with your doctor. Take time, that couple of days before, to think about how am I now, what has changed, what are my worries, and write them down. And think wider than symptoms. Think about how you’re managing your everyday things and what your worries are. Because if you go in with the list, they’ll see it. And even if they don’t see it, slash pretend they don’t see it, holding it in your hand going off a couple of things I want to go through, gives breathing space to ask some of the things. So again, it’s just trying to find ways that let that person feel that they’re leading, and leading the conversation so that any interventions that come are most likely to be meaningful for them. And it is really hard. And services certainly in Ireland are very fragmented. And there is a lot of geographical inequity there, which is why online resources and through the likes of yourself are so helpful, because it does take down the barriers around that. And I don’t know about you, but over COVID, certainly a lot of our clients, when we’re doing telephone calls, it’s not the same, a telephone medical review that’s faced to see a person or particularly if you weren’t expecting the telephone call, you know. You need you need your appointments to be planned, you need them to have that space so that you can get the most from that time as well.
Cheryl:
I love that. And I think that your note about preparing specific examples from your life of what you can and can’t do is really key because what I’ll tell people is, you know, pain is extremely subjective. So yeah, they’re gonna have you rate your pain on a scale of 1 to 10 which, to me, is pretty much meaningless most of the time. I mean, it’s important on either end of the poll, right? If you’re at zero, it’s significant. If you’re at 10, it’s significant. But in between there, it’s like, you know what color is love? Like, it’s just an impossible question for me to answer like. I always tell my doctor, if you do the subtypes of pain, I can answer it on 1 to 10. Like, stiffness, dull ache, hot, you know, inflamed, tenderness, you know, stabbing pain, you know, there’s different kinds of pain I can rate on 1 to 10. The general aggregate, just, I don’t know how to do that. I’ve had this for 19 years, and I have a master’s degree and I don’t know how to do — I don’t know, because I might be a zero on stabbing, but like an 8 on stiffness, like am I supposed to just average that? Like, a four means nothing, you know, so the point being but when you, but so, that’s subjective. But objective, if you say, “I can’t put my child’s diaper on, because it hurts my hands too much. I can’t lift a cup of coffee, I can’t lift my mug of coffee,” like, the things that you can and can’t do. That’s objective, you know. So.
Dr. Yvonne:
“When I finish preparing a meal, my pain is way worse. And I’m wiped for the rest of the evening,” you know, “When I go to lift my child into the car, my wrist is throbbing and I need to use ice or I need to take painkillers.” So, I think bringing it back to function is really tangible. And I think the other thing is it also helps you notice change over time, because pain is pain, of course, but pain when, and pain doing what? That gives the context; it’s really, really important. And I think that’s bringing it back to function means that, I think, it increases the chance of getting value out of your interactions because those function needs can be addressed.
Cheryl:
Absolutely, yeah. And is there anything else you wanted to just share with the audience that we didn’t get a chance to touch on before we wrap up?
Dr. Yvonne:
I’m sure I’ll think of a hundred things, but.
Cheryl:
Oh, immediately after we’re done, I always do, too. Oh, I should have said this, I should have said that. Yeah.
Dr. Yvonne:
No, I think it’s been really nice to have a conversation around parenting because it is an area that doesn’t get the attention. And I know that you’ve done a talk for us back in March about your experience of parenting and all these practical things, and problem-solving things that you are so good at and with your OT hacks before. But I think it is really important for any parents who has arthritis to just to have that thinking bit because some things might be fine. But that doesn’t mean that the one thing that drives you mad is not important to try and look at managing in another way, in whatever that other way might be. So, thank you, Cheryl. It’s been lovely.
Cheryl:
Well, yeah, I think, no, thank you so much. I know that you are very, very busy with your research and teaching and being an OT and being a mom, all your different roles. But if people want to find you or connect to you online, where can they do that?
Dr. Yvonne:
So, I’m on Twitter at @YvonneCodds. And you can also, that’s really where I am, or the School of OT in Trinity, is at @TCD_OT, which is where I work.
Cheryl:
Okay, okay, great. I’m putting that in the show notes as we speak. I’m literally typing it in. So yeah, these will be linked in the show notes on my website. So, on myarthritislife.net is my website. So, thank you so, so much again, I know that there’s people listening who feel like they’ve been seen, that they’re not alone, and that maybe they will consider getting some of the supports that we mentioned. So, thank you again.
Dr. Yvonne:
Thank you so much. Take care.
Cheryl:
You too. Bye-bye.
