Episode 27 – Living with rheumatoid arthritis

Debbie: Hello and welcome to Inflammatory with Debbie.

Katy: and Katy.

Debbie: This week we’re delighted to be joined by Sarah Yorke, who like Katy lives with rheumatoid arthritis or as many people know it as RA. RA is a type of inflammatory arthritis and it’s where the immune system attacks the joints causing pain, stiffness, fatigue, and if left untreated, it can cause long-term joint damage. But as with all types of inflammatory arthritis, it’s also that impact on our emotional and mental health of living with a chronic long-term fluctuating disease. There are over 400,000 people in the UK living with RA with around 27,000 newly diagnosed each year from the age of 16. But Sarah, welcome.

Sarah: Thank you very much for having me.

Debbie: It’s great to have you here. So, I was wondering if we could start off by going back to those times when you had the symptoms, what were your symptoms and then what led you to your diagnosis?

Sarah: So, I remember one day waking up after a very intense event. I’d been invited to St. James’s Palace, which was amazing. And I was wearing for the first time ever, because I never used to wear heels. I was more like alternative, and you’d never catch me in heels, but I did wear heels for this event. And I remember I came back to uni the next day. And I was walking down some stairs like first thing in the morning, and I was like, my goodness, I can’t actually walk properly. Something’s wrong with my feet. And I felt very like stiff, and it was horrible. And then when I was walking up to lectures, my feet just felt so swollen. It was really horrible. So, I actually went to my uni GP, told him what the problem was. I think I also had swelling in my fingers as well. And the GP just looked at me and was like, well, you look too young to have arthritis. Haven’t we heard that before?

Katy: Yep

Sarah: So, you should just go away and do yoga. I’m not even going to bother with a blood test. Go away and do yoga. Luckily, I was in my third year. So, then I went back home, to my family home and I saw my GP, who’s known me since I was a baby. And he also knows that my mum worked in the NHS and has given a lot of years’ service to the NHS. So, he was like, you know what, Sarah, I’m going to run every single blood test under the sun, and we’ll see what’s going on here. I think it’s more than a virus. Blood tests came back fine. So, he said MRI scan. So, I had MRI scans and X-rays and they showed that I had rheumatoid arthritis, but also in the year where I hadn’t been diagnosed, I also had some bone degeneration in my thumb. That was that journey to diagnosis really.

Katy: And had you heard of RA or inflammatory arthritis before you were diagnosed?

Sarah: Absolutely not. I couldn’t even really spell arthritis. I think I was spelling it like Arthuritis. And then my friend whose granddad has osteoarthritis was like, I think it’s spelled like this. So, I’d heard that some older people, think my Nana had had a different form of arthritis, but she didn’t have rheumatoid arthritis.

Katy: Okay. Yeah. I used to really struggle with spelling rheumatoid, if I’m honest.

Debbie: Yes, medical terminology is never straightforward to write, it, at all? But then how, being then told you had, you know, rheumatoid arthritis, how did that impact on you? Because you obviously, you’d never really heard of it. So, what were your initial thoughts, if you can remember back at that time?

Sarah: Yeah, I think I thought, I remember I went to my family GP again. It wasn’t the same GP that I’d seen, but it still another one that was at the same practice, and he knew my family well. And I looked at him and I said, right, well, this is, this is fine, but what tablets do I take? And then I’ll be better. And then he looked at me and he was like, hasn’t anyone told you like, this probably isn’t going to go away. And I just broke out in tears, and I was so upset. I didn’t really know what was happening to my body. It was really scary.

Katy: And what sort of impact do you think that had initially on your mental health?

Sarah: I think I was in denial actually because I didn’t really, so I didn’t know what it was. I just knew that my body was in pain, but I also knew that I was like quite young. I was a bit lost anyway after just finishing uni and you don’t really know where you’re going to go or what direction. And then one of my friends was actually travelling and I decided to go and join her traveling. And I thought, well, I’m just, I was just in denial.

I was in complete denial really. Then if I was thinking about, because also the tablets that I was on, and I won’t talk too much about it at this stage, but they weren’t really helping me either. So, I think I was just in a bit of denial, very uncertain about what was going on and just felt quite unsteady really.

Debbie: Did you actually Google rheumatoid arthritis when you had that diagnosis?

Sarah: Think I might have done, but I really don’t remember much about that. I just felt very lost, very isolated as well being younger. And like, if you went to a clinic appointment, I remember one time this man came in who must have been like a good 30 years older than me. I, and he was the other younger person in the clinic other than elderly people. So again, more confusion, more isolation. Yeah, it was a very confusing time.

Katy: And what sort of impact did it have on friends or family? you, were you able to sort of explain the disease to them? How did you kind of get through that?

Sarah: Yeah, I can’t actually remember. My mum was initially, she obviously was upset because being a nurse, she knew what it was. And then I don’t really know, I can’t really remember so much about how the rest of my family really felt because if I can’t really articulate what’s going on, all they know is that I’m in quite a bit of pain and I’m worse in the morning than I am in the evening. Again, that was very bizarre. So then again, people don’t understand it because in the evening times I could maybe go out, but then other time, but I’d still got tired quite quickly. And I remember someone saying, Oh, we’re not old people. Why, why are some of you going home now? I was like, some of us are tired and yeah, it’s just a condition. but that was very difficult.

Debbie: It is that fatigue that is so misunderstood. No one seems to get that at all. Because it’s not only the pain, it’s obviously, it’s your immune system working overdrive. And obviously something’s going on that is going to make you even more tired as well. And it is very hard to articulate that over to friends and family. But going back to the time then obviously you were travelling. Do you think obviously then being in denial, do you think that helped you? Or when you came back, do you just think, I wish I did something different?

Sarah: I wouldn’t say I wish I’d done something different, but I think I should have done something different. I think I learnt a lot from travelling, but knowing what I know now, the best thing for me would have been to take a step back, really look at all of my health, which is what I did end up doing anyway, it just took a bit longer, really look at all of my health and give myself some downtime, stay with friends, stay around my friendship group, stay around my family. That would have been better than pushing myself to travel. Yeah, that’s what I would have done now.

Katy: You’ve talked a little bit about a lot of the misconceptions around sort of people thinking of arthritis as being, something older people have are there other misconceptions, you wish were more out there in the open.

Sarah: I guess as well, it’s that fatigue. But there’s also about that balance. I think people need to know that yes, I can go to the gym. I can go and do a workout. I can go for a walk, but I can’t do other things. I might not be able to stay out too late because I start getting really tired. But I do also look after myself. So, lack of not looking after myself, that I still have a condition. That’s another thing. I guess people might think, well, if you’re doing this, I that shouldn’t be better now. No, this is with me probably for the long run, but I can manage it.

Katy: Yeah.

Debbie: Sarah, how long did it take you to then get out of that denial stage to go, right, I need to do something myself. I want to try to control this uncontrollable disease. How long did that take you?

Sarah: Well, it would have probably taken a couple of months maybe, so definitely after I came back from traveling. And then I was told when I was on medicine, I was told you can’t drink alcohol. So, I stopped drinking alcohol. Not that I was a heavy drinker, but I just got out of being in uni, was like early twenties, you know, you go out partying quite a bit. Not drinking alcohol meant that I actually became a lot healthier. I’ve always been interested in going to the gym. I’ve always been interested in like health and fitness, but I ramped it up a bit more, lost a little bit of weight, which helps with your joints. So, I would say it maybe took a few months for me to really start implementing things like that after I’d come back from travelling. So that’s maybe about six months or so after getting the proper diagnosis.

Katy: That seems pretty good to me, to be honest, in terms of in your own mind, thinking about ways to help. So aside from the exercise and, thinking about your overall health what else do you think has really helped you manage the condition?

Sarah: Sleep is the number one. I don’t care what anyone says, yes different people have different body clocks and some people can function on less hours, but really if you are sleeping with what your body needs then you can actually, for me it gives me a better stance on dealing with the day from a mental health point of view, but also my body has rested. And I always remember one of my friends saying to me when we were like early twenties, after my diagnosis, saying to me, Sarah, you’re so good with your sleep. I wish I could be like you. Cause it would get to a certain time, and I’d like, I need to wind down now. I need to start like going home. Like if we were all out, not always like, obviously I’ve had like a few late nights. I’ve had quite a few different fun parties as well but generally sleep really helps and nutrition as well. Eating the right foods, generally whole foods, there’s quite a bit of research out there that says the benefits of Mediterranean diet for RA and then drinking lots of water. But just a general healthy lifestyle.

Debbie: Yeah. which I think most people should be doing anyway, but when, you’ve flare, because I must admit when I flare, it is so hard to keep, the movement, the exercise, the nutrition, because the pain makes me just feel like I am just even more tired and I just need something just quickly to keep me going. What do you do when you flare and how do you kind of keep yourself on track?

Sarah: Yes, and just to add to that, so I usually flare when I’ve been stressed. So that is another thing. I try to a minimum, and that is through several key life choices, which can be very hard to make, but you have to put yourself first in lots of different situations. But when I do flare, it’s usually, it shows in my wrists a lot and it’s very painful. I might go for a walk, I will not be going to the gym trying to lift weights if I’ve got a flare. And you also want to make it like a nice environment for yourself. You still want to try and eat right, but. I’d just rest and try and eat healthy foods if I’ve got them in. If I was to order a takeaway, yeah, it’s kind of easier, but then I’ll feel worse after it. I know I will, and with the flare. I don’t think sugar and salt and artificial foods like that will make you feel better in the long run, so I would just tend to rest, maybe have a nice warm, warm to hot bath, rest and drink lots of water and eat decent food.

Katy: You’ve talked quite a bit about your day-to-day strategies, but in terms of things like we’ve talked previously on here about pacing and support systems. So, when you’re flaring, who have you got that’s around you that can help and support you?

Sarah: Well, my mum is very understanding so I would probably call her if it was bad and have a chat. She would probably give me a few helpful pointers. But I do also have my partner who’s very supportive. Again though, I feel with everyone you have to be really clear because again, he sees me every day and I’m usually the one saying, come on, let’s go for a walk on, are you going to join me at the gym or I’ve made this healthy dinner. So, he usually sees that really healthy side. If I’m not feeling great, just need to say, and then I’ll get that support and I need to be clear then I’ll get that support.

Debbie: I think we’ve discussed in the past, Katy is those clear boundaries as well. And just being transparent and honest with, what we are going through, whether we’re flaring, but whether we’re having a good day and just, but making sure we have that support that is so vital. And I’m so pleased there that you have that support as well.

You seem to have a really good positive mindset, which I think Katy and I have as well, but it can be so hard at their days when you just think, I’m not getting up to out of bed today.

Sarah: Don’t hate me, but usually, no, I don’t have those days, but,

Debbie: Wow, that’s good

Sarah: But that is because I am also on very good medication now it has given me my life back because there was a time that really, felt so dreadful. Felt like I was knocked out with flu, like just for my medication and it wasn’t even touching the rheumatoid arthritis. And I was kept on that type of medication for about four years and it was only by sheer fluke from a yoga instructor who I told him I can’t do different moves I have rheumatoid arthritis and he kind of sat me to one side and was like you sit over here and I’m gonna do different moves for you and I was like okay and then he spoke to me at the end of the session he goes I’ve got a friend also called Sarah, she’s a yoga instructor like he was. She’s on this fantastic new medication for her, rheumatoid arthritis. And I’m going to give you her number. One day, was actually at a friend’s house in London and I got this random phone call from this yoga instructor called Sarah, who I’ve never met, but she called me and we had a conversation. She was like, what meds are you on at the moment? And what are you doing with this? she goes, right, via the nice guidelines, you’ve ticked the boxes so you can now go on this medication. So, my next consultant appointment, I said, I know about this. Can I please be on it? And she wouldn’t have brought it up otherwise, the consultant. And she was, yeah, yeah, you can actually. And so, it was a very random journey to get on this medication, which has really given me my life back. And when you say it like that, it makes me really realize what a good quality of life I have because I don’t have those days in bed. I would have them if I went out drinking night before and all of this but I try to limit that kind of thing.  

Katy: Yeah that sounds really good, and that, leads on quite nicely because one of the things I think I found, I struggled with when I was first diagnosed was navigating all the different healthcare appointments. How have you found managing, being a young adult, newly diagnosed, managing all the appointments, all the different tests you have to have. How’s that been over the years?

Sarah: I mean, I have definitely learned a journey through the NHS and that’s not just, my gosh, I remember I used to have to have blood tests every two weeks and sometimes I’d get a nurse that would puncture my veins so I was put off blood tests.

Katy: I can remember having massively bruised inside elbows.

Sarah: So that put me off having blood tests. I still had them, but, luckily I only need them every six months, but I’ve also had a lot of, experience with navigating surgery through the NHS. And, one of my biggest pointers that I would ever give anyone is, you know, your body, because I once was seen by a consultant who was trying to give me foot surgery. For a part of my foot, which did need intervention, but this consultant was trying to give me a fusion and he said, you will not be able to run, you will not be able to do yoga. And I said, hang on, I don’t think, I don’t think I need that. And he’s like, I will make the decision of what you’ll have. And I was like, gosh. And I’d already heard it made someone else cry in the waiting room. And I was like, who is this guy?

Katy: that was dreadful.

Sarah: It was dreadful. Anyway, till he went out of the consultancy room and I just burst into tears, and the nurse came through and she was like, no. And I was like, that was horrible. Anyway, I knew that I could get a second opinion. So I did. went back to my family GP and I told him what happened. I said, I don’t think I need this type of surgery. So, my GP was like, right we’ll put you through to a different hospital. So my GP was like, you’re going there. We’ll see what they say. Trust your instinct because this consultant said, we don’t need to do a fusion. We need to do X surgery, but you’ll be fine afterwards. Maybe don’t run marathons, but you can run a 5k. You can carry on being active. And I literally, I think I shook his hand, I said, thank you so much. You’ve said exactly what I thought I needed, but you need to have that confidence to be able to navigate through those situations and I only really knew about the second opinion through having a mum that had worked in the NHS and I asked her about that. I did have to go through patient advice and liaison service as well, but you can always get a second opinion, if something doesn’t feel right do that.

Debbie: So, your journey, Sarah, sounds really incredible and it’s great that you can advocate for yourself and empower yourself and are hoping that people can really take that on board because I find it really hard to ask for a second opinion because you feel that they’re the ones that you should be listening to. They know everything about it, but as you say, it’s listening to your body. You mentioned if you would go back to the time you were diagnosed, what would you change? But what advice would you give yourself at that time?

Sarah: Take it easy, it slowly, do your research, not from one source. There are lots of different articles out there. At the time I was a lot younger, so I didn’t know that much about different academic papers and the latest research, but maybe, you know, can you do that with like a friend or like my mum or someone look at like actual proper research, not what’s actually not what’s on Google, you know, random search, people can write anything. But the biggest thing really would be more time for myself.

Debbie: completely. If there’s one thing you wish more people understood about RA, obviously we mentioned fatigue, what else would you want people to understand?

Sarah: It’s difficult and sometimes, you know, I can be looking really fit and healthy and the next day I might not be feeling that great and that is part and parcel of rheumatoid arthritis and other inflammatory conditions.

Katy: You’ve talked a little bit about this already, what you do when you’re flaring to make yourself feel better. I guess actually just to slightly change this, what could like a partner or a friend or a relative do to help somebody who’s going through a flare?

Sarah: I’m smiling a bit because I’m thinking, oh, it would be nice if my boyfriend could cook me dinner. No, he’s very good. but it is just general little things like that. I mean, for example, with my work, my manager’s great. She’s like, right, well, you don’t need to necessarily come in the office today. And I think work is a major environment where they can really help you. Or hinder you, work having that understanding and that care is so important.

Debbie: That’s great. Think that’s what we would say as well. But Sarah, thank you so much for giving up your time today. And it highlights that everybody’s journey with inflammatory arthritis and obviously having two here with rheumatoid arthritis, your journeys can be very different but also have something that really resonates with each other as well, that you both went through denial with it all. Katy you ran the marathon, Sarah, you went travelling. It is what people do and it’s so natural to feel like that. So, if you are newly diagnosed, do what Sarah said, take it easy on yourself. Do not feel guilty for not doing things or doing things. Just listen to your body and just listen to what is right for you. Sarah, thank you so much for giving up your time today. Sarah is on Instagram. Her handle is…Arthritis Fit by Sarah. Please look her up on Instagram and you can follow Sarah’s journey. But thank you so much for listening. Please do fill out our inflammatory survey. We are starting to plan for 2026 already. It’s coming around very quickly. And your input into that is extremely invaluable. It really help us to know what you want to hear and what you don’t want to hear about.

Please do rate and follow the podcast from wherever you get the podcast from. We are now on YouTube where you can actually watch the recordings of the episodes and you can sign up to our regular newsletter at InflammatoryArthritis.org. You can follow us on social media. We are on Facebook, Instagram, Blue Sky and LinkedIn. And until next week, where we’ll be discussing the pain that comes living with IA, it’s goodbye.

Katy: Goodbye.

Living with Rheumatoid Arthritis: Sarah’s Journey from Denial to Empowerment

In this episode of Inflammatory!, Debbie and Katy sit down with Sarah Yorke, who shares her deeply personal journey with rheumatoid arthritis (RA), from the confusion of her first symptoms to the challenges of getting a diagnosis, coping with denial, and ultimately finding strategies that help her live well with this unpredictable condition.

Sarah opens up about:

• The frustration of being dismissed by doctors as “too young” for arthritis
• The shock of learning RA is a lifelong condition, not a temporary setback
• How denial shaped her early response and what finally helped her move forward
• The mental health struggles that come with living with a fluctuating illness
• Day-to-day strategies that make the biggest difference: sleep, nutrition, exercise, and pacing
• The importance of self-advocacy in healthcare and learning to trust your own instincts
• Misconceptions about RA and why fatigue is one of the hardest symptoms to explain

Her story is one of resilience, honesty, and hope, and a reminder that while everyone’s journey with RA is different, no one has to face it alone.

Guest:

Follow Sarah Yorke on Instagram at @arthritisfit_by_sarah for more on her health, fitness, and RA journey.

Links & Resources:

• Take our Inflammatory! survey to shape future episodes: InflammatoryArthritis.org
• Watch episodes on YouTube
• Follow us on Facebook, Instagram, Blue Sky, and LinkedIn
• Subscribe to our newsletter at InflammatoryArthritis.org
• Link to NICE guidance for rheumatoid arthritis

🎧 Don’t forget to rate, follow, and share the podcast to help us reach more people living with inflammatory arthritis.