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Patient Stories, Podcast

RA, Cancer, and Starting Over: Yasmin’s Story of Resilience

March 5, 2026
52 min read
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Summary:

What happens when your symptoms are dismissed, your diagnosis is delayed, and you’re left to piece together your own path forward? In this episode, Cheryl talks with Yasmin, an artist and poet from Manchester, UK, about her 10-year journey with rheumatoid arthritis. Their conversation touches on the difficult road to diagnosis, periods without appropriate treatment, and the emotional toll of being brushed off in medical appointments.

Yasmin also shares what it was like to navigate multiple major health crises at once, including serious GI symptoms and an unexpected breast cancer diagnosis, and how it all impacted her mental health and anxiety. Together, Cheryl and Yasmin explore the tools that helped her cope and rebuild: therapy (CBT/talking therapy), journaling, poetry, mindfulness, support groups, pacing, and learning to advocate for herself.

Yasmin’s message is clear and hopeful: life may change after diagnosis, but it doesn’t end. You can still pursue dreams, create meaning, and build a full, beautiful life.

Episode at a glance:

  • 01:43 Misdiagnosis Then RA
  • 03:32 Lockdown Flare And Meds
  • 04:34 Why Early Treatment Matters
  • 09:55 Breast Cancer Diagnosis
  • 15:46 Therapy Journaling And Art
  • 21:02 Support Groups And Pacing
  • 24:52 Self Compassion And Boundaries
  • 26:56 Learning Self Advocacy
  • 30:24 Pushing for Imaging
  • 33:48 Handling Dismissal

Medical disclaimer: 

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

Episode Sponsors

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

Speaker Bios:

Yasmin Ilahi

I am an artist, poet and author living with RA, vasculitis, gastrointestinal disease, sjogren , osteopenia. I live at home with my husband and three children.

Cheryl Crow

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

Episode links:

Full Episode Transcript:

[00:00:05] Cheryl: Hi, Thanks for being here. 

[00:00:16] Yasmin: Thanks for having me. I’ve been really excited to do this and to share my journey and story with rheumatoid arthritis, so yeah, I’m excited. 

[00:00:23] Cheryl: Yeah, me too. And just to give a quick introduction Yeah.

[00:00:26] Cheryl: Can you let everyone listening know where do you live and what is your relationship to arthritis? 

[00:00:32] Yasmin: Yeah, so I live in the United Kingdom in Manchester, and my relationship to rheumatoid arthritis is that I’ve been diagnosed now for 10 years and it wasn’t an easy journey to get the initial diagnosis.

[00:00:48] Yasmin: So, yeah. 

[00:00:50] Cheryl: Yes, and we always go into detail. ’cause unfortunately you’re not alone in the diagnosis saga. So can you tell us a little bit more [00:01:00] about, what were some of your first symptoms and how did you eventually get to the diagnosis? 

[00:01:07] Yasmin: Yeah, so my first symptoms were, I started feeling really tired.

[00:01:13] Yasmin: But the main thing was swelling in my hands. In both hands actually. So I went to the gp, that’s the first place you usually go. And straight away I was kind of a little bit dismissed or have you knocked your hands? Have have you bumped your hands into something? I was like, no, I haven’t.

[00:01:28] Yasmin: And then I was just sort of sent away, here’s a prescription for some painkillers and that’s it. Nothing else. But then this persisted for quite a long time and so I went back again. And then this time they said, okay, we will refer you to a rheumatologist. So after waiting for a couple of months, I got to see a rheumatologist and I was told that I had fibromyalgia and I was just put on some amitriptyline medication and again, sent away, take this medication.

[00:01:57] Yasmin: That’s it. Nothing else, no follow up [00:02:00] appointments, nothing. So I took, I started taking that medication, but I just didn’t feel quite, like writing myself because I was feeling more tired, more fatigued, the symptoms of brain fog. Then I started getting a lot more pains in my knees and my wrist and my other joints.

[00:02:20] Yasmin: So then I wanted to be referred again. So after, this was two years later after first seeing a rheumatologist. I went back again and they did some more blood work, went back to get my blood work and they said yes, actually you do have rheumatoid arthritis. So, and I think I did have rheumatoid arthritis from the start, but you know, I was just sort of told you didn’t.

[00:02:44] Yasmin: But yeah. So then I think it was good then to know that, yeah, I’ve got a diagnosis. Initially I was a little bit shocked. What is this? Rheumatoid arthritis. I didn’t really know too much about it. But then, I wasn’t actually given any medication [00:03:00] straight away from my rheumatologist, which was looking back now, I mean, I didn’t know.

[00:03:05] Yasmin: I just thought, okay, very mild that I was told very mild rheumatoid arthritis and I wasn’t given any medication. So. Looking back now, I think, ’cause I know you’ve always said as well, Cheryl, that getting treatment straight away really makes a big difference to the disease progressing.

[00:03:23] Yasmin: But no, I wasn’t given, I wasn’t given any medication straight away. So 2016 diagnosed with, first of all, fibromyalgia. And then two years later, rheumatoid, so that was then we were sort of heading into the pandemic time and obviously everything was locked down. Even just even being able to get an appointment in a hospital was completely a no-no. So my knees, actually, I just came back from holiday in 2019. It was December. And then heading into January, my knees got so bad where I literally couldn’t walk. I was [00:04:00] bedridden. And I was just on painkillers, not really being able to move. And then by the time lockdown happened in March, I think it was March 2020, wasn’t it?

[00:04:11] Yasmin: I then was like begging just for an appointment but couldn’t see rheumatologist ’cause I couldn’t see, get a face-to-face appointment. So then I was just told, here’s a prescription, we’re gonna send it out in the post. It’s for hydroxy, the one that I can’t pronounce. Yeah, 

[00:04:27] Cheryl: Yeah. 

[00:04:28] Yasmin: And then that’s what I was just put on straight away and, yeah, so that kind of happened.

[00:04:34] Cheryl: Well, and yeah just to sprinkle in some education here, like even in 2018 when you were diagnosed, the phrase that kind of signified the treatment approach for rheumatoid arthritis was early aggressive treatment. And when they say treatment, they mean medications.

[00:04:51] Cheryl: And there’s, and it’s because there’s a lot of evidence that treating rheumatoid arthritis, particularly within the first three to four months of the symptom onset [00:05:00] significantly treating it with medica, these disease modifying anti REI drugs. Yeah. Whether that’s hydroxychloroquine, methotrexate, or the more like specialty medicines, like the biologics that actually it’s.

[00:05:12] Cheryl: It’s counterintuitive, that increases your chance long term of actually a drug free remission. So if it’s like you kind of have to do the drugs quickly and then that actually increases your chance, not only of remission in general, but even being able to wean off those medicines. And the analogy my doctor used that I often repeat on here is it’s like a fire.

[00:05:32] Cheryl: If your house is on fire. You wanna it’s better to just hit it with almost extra water, right? Like just put all the water on it really aggressively, rather than going really slowly and being like, oh, I’m just gonna see it. This little trickle of water. So what the fact that you weren’t put on any medications in 2018 even.

[00:05:47] Cheryl: I’m not a doctor. This is not medical advice, but I could say from my knowledge and experience in this world of rheumatoid arthritis, being an occupational therapist, and being involved in the rheumatology associations, that’s very unusual because you’re [00:06:00] withholding a treatment that is a progressive disease.

[00:06:02] Cheryl: Even if it’s mild, it’s progressive. So withholding a medication that can slow that progression is unusual unless the person has like a severe allergy or they don’t want to do it. So anyway, sorry. Just find that out. Yeah. Yeah, 

[00:06:16] Yasmin: I totally agree now because I’m more educated on my disease and I didn’t know.

[00:06:21] Yasmin: I was just like, okay, I don’t need any medication. Maybe this is a good thing. Looking back now, I, I got very angry. ’cause like you said, I maybe wouldn’t be in the stage I’m at now because I do have quite a few deformities now, which I do think is because I wasn’t put on medication straight away.

[00:06:38] Yasmin: I really think if I would was put on, methotrexate or even a biologic, I wouldn’t have, the nodules that I’ve got the deformities on my joints, on my foam, on my fingers. And I do believe that it’s something that I do strongly believe, but I was never, I mean, I couldn’t advocate for myself back then because I didn’t know what was going on.

[00:06:57] Yasmin: I didn’t know that I had to ask these questions. I [00:07:00] know now because I’m more educated on my disease and I did more research and I know now that yeah, I should have been put on treatment straight away. I wasn’t, sorry. So Yes. Yeah. So after, basically after this diagnosis of rheumatoid arthritis during lockdown, so I was on this medication and I was feeling kind of okay, not perfect, but you know, okay, yeah, the medication’s doing a little bit of something.

[00:07:26] Yasmin: But then in 2021 started the year, I started getting other symptoms, which weren’t necessarily to do with the rheumatoid, but maybe they could have been. So I started getting quite a lot of gastrointestinal issues. So I got severe acid reflux and at a point where I literally couldn’t swallow any food.

[00:07:47] Yasmin: I couldn’t eat anything. I couldn’t swallow. I was choking. It was really scary. I couldn’t eat somebody that really enjoys food. I literally, I was on a liquid diet. I was losing weight, literally losing so [00:08:00] much weight. And I was like, what’s going on? Went to my gp. I was told, okay, you’re gonna have to get an endoscope done.

[00:08:07] Yasmin: That took a couple of months to get that done, and that came back clear and I was told, oh, you’ve got severe acid reflux. You need to go on omeprazole. So I did go on the omeprazole. Eventually I could start eating a little bit of solids and, I was thinking, okay I’m eating a bit better now, and I really wanted to put the weight back on because I felt like I, I was just looking very unhealthy at the time.

[00:08:30] Yasmin: And then I was still dealing with all the rheumatoid symptoms, the flareups the joints not being able to walk. And then to add insult to injury, you’re thinking, you’re going through all this you’re not being able to eat. You’ve got this rheumatoid, inflammatory condition.

[00:08:48] Yasmin: One morning I just woke up out of bed a normal Monday morning. I was getting ready to get my younger child to school, and as I got up out the bed, walked to the stairs I suddenly just felt like I [00:09:00] was spinning and I collapsed to the, from the stairs to the bottom of the stairs. 

[00:09:05] Cheryl: Okay, 

[00:09:05] Yasmin: and when I came round, I was at the bottom of the stairs.

[00:09:09] Yasmin: And I just didn’t know what was going on. And I mean, luckily I didn’t hurt myself. I did have a bit of a graze on my chin, but nothing was broken. That day I ended up going to a and e just to find out what was going on. It’s like 

[00:09:21] Cheryl: emergency and for gp, like our primary care doctor and a and e is like our emergency room.

[00:09:29] Yasmin: Yes. Sorry. So, that’s okay. And then they actually admitted me that night because they said, look, you’ve been in and out of a and e or the ER for some time now. And I didn’t know what was going on. I just thought maybe it’s because I’m not eating enough that I maybe had a dizzy spell, a little bit of, of fainting episode.

[00:09:49] Yasmin: But then the consultant came round and he did some checks on me and I didn’t know, again, what was going on. And then they referred me to the breast clinic. And I’m thinking, well, what’s going on [00:10:00] breast clinic? I’ve got rheumatoid arthritis and some gastro issues. What’s going on here? So yeah.

[00:10:07] Yasmin: Anyway, I went, I got seen pretty quick. And so they did a mammogram on me and I didn’t have any symptoms. I didn’t have any lumps, I didn’t have anything going on in my arm, in my breast or nothing like that. I did have a little bit of swelling in my armpit, but I just, I was told by my GP that it could just be like a lymph node because you’re a little bit under the weather and with the rheumatoid sometimes you can get lymph nodes.

[00:10:30] Yasmin: So they did all these biopsies. And then I was sent home and didn’t really think anything of it. Then I was got a letter saying, you need to come back in. Came back into the hospital and was actually told that I had breast cancer. Wow. On top of everything else that I’d been going through. And it was a shock.

[00:10:49] Yasmin: It was a really bad shock. Yeah. 

[00:10:53] Cheryl: That’s a lot all on top of each other. Did that explain any of the stomach symptoms or No? Were the kind of three 

[00:10:59] Yasmin: different No, [00:11:00] 

[00:11:00] Cheryl: just three. Totally bad luck. 

[00:11:01] Yasmin: Yeah. They literally weren’t related in any way at all. For me it was a major shock and for me also it really going through the rheumatoid diagnosis, not being able to eat really messed with my mental health.

[00:11:14] Yasmin: Plus we had COVID lockdown that really kind of made my health anxiety really bad. But then when I found out I had breast cancer I think I just had a bit of a breakdown, a really mental breakdown. I was just like, what is going on? What’s happening to me? What, why is all this happening at once from being someone that was quite healthy?

[00:11:32] Yasmin: I never had the flu. I’m never really ill for all of a sudden just to get all these things happening within a matter of a couple of years really. All the major things just happened. And yeah, so this was a shock for me. And then I was told that I needed to have surgery done just to see if the mass was the malignancy was it.

[00:11:57] Yasmin: What was it? ’cause it was a five centimeter tumor, but [00:12:00] they didn’t know how bad it was until they did the surgery. And then that the results came back after eight weeks. So the waiting was really stressful for me as well. The anxiety, I’m quite an anxious person anyway, but this just made me really anxious.

[00:12:15] Yasmin: And then I was told that I had to have a mastectomy done, so I had the surgery done. Again, going through all that and just my mental health was really spiraling out of control. And I just felt I actually thought at one stage that I wasn’t gonna make it. I was gonna die and this was it.

[00:12:32] Yasmin: This was the end for me. To be, it really sounds extreme, but it’s a shock. 

[00:12:36] Cheryl: Well, I mean, you had cancer. That’s probably what every single person who had cancer probably has thought that. So you don’t need to, justify. Yeah. And I just wanna just ask, so to have even a bigger perspective on what your life looked like, how old were your kids at that time?

[00:12:51] Yasmin: Yeah, so, God, my youngest was only eight. My, my little, I always say he is my baby and he was eight and my, oh [00:13:00] God. So the older two were probably like. Well, my daughter just about to start university actually, so it’s a very important time for her. And she’s got a mom that’s going through this and she was actually moving away, so it was really stressful.

[00:13:13] Yasmin: And I think she was 19 and my oldest was probably. 20 21. I can’t remember exact age. Sorry. 

[00:13:21] Cheryl: I mean that’s, yeah, just to give a picture of, because you’re said it’s not just you, it’s not just impacting your life. It’s your family

[00:13:30] Yasmin: my family, my husband. And for me, when I got that diagnosis. It was, am I gonna be here to see my children grow up?

[00:13:38] Yasmin: Am I gonna be here to see my younger son grow up? Am I gonna be here to see them graduate university? Am I gonna be here to see them get married? Am I going to reach, miss all these things? That’s the first thing that came into my head. And so once that treatment was all done for that I thought to myself, okay, my rheumatologist then got back in touch and said, I need to speak to your your surgeon, breast surgeon and see [00:14:00] what next treatment we can do for the rheumatoid. ’cause that was actually getting quite bad as well. So I was on steroids for a year just to try and help with the inflammation, at that time.

[00:14:12] Yasmin: And then I was, once, the concentrate, everything was sort of done, the surgery and everything. I was then put on methotrexate. So it was just a whirlwind, and so many things were happening at once, and as I was trying to deal with my own emotions and everything that was going on, I was trying to also deal with my children and 

[00:14:32] Cheryl: yes, 

[00:14:32] Yasmin: my wider family and friends.

[00:14:34] Yasmin: So it, it was a lot, it was really a lot.

[00:14:36] Cheryl: And that’s I am before we started recording, I always ask people, what are you most passionate about sharing from your story? Or what are you most passionate about, kind of delving deeper into, and I was really glad that you said that.

[00:14:48] Cheryl: One of the things that you’re open to talking about on the podcast is the way that, having these dual diagnoses, and even rheumatoid arthritis by itself, but also with the GI [00:15:00] issues and breast cancer has impacted mental health. And I would love to hear what are some of the things that have helped you cope, like with all the overwhelm.

[00:15:12] Yasmin: Yeah. So first and foremost, I would say my amazing husband. He has done so much for me and really, being so supportive. And my children, the older two, especially because my younger son, I didn’t tell him what was happening at the time. It was, it would’ve been too much for him as a younger child.

[00:15:29] Yasmin: So he knew about the rheumatoid, but at that time he didn’t know about everything else. And, my older two children was, I didn’t want, I felt like I didn’t wanna burden them, but they were saying, they say to me, mom, we’re here. You need to be honest with us. Tell us how you’re feeling.

[00:15:41] Yasmin: So the support from them. Also the support from my family and friends. My, my closest friends were amazing, and also I did a lot of therapy, not straight away, but I think a little bit, maybe a few months later, I did a lot of therapy. So psychotherapy. 

[00:15:58] Yasmin: And CBT [00:16:00] talking therapy, we call it over here in the uk.

[00:16:01] Yasmin: Just to talk about, your emotions and being able to just be honest with somebody that’s impartial. I mean, you don’t really, because sometimes we don’t wanna tell our loved ones everything, how we feel ’cause we don’t wanna burden them. So to speak to a professional really and just get everything out, all my worries and and also I journal a lot, so I think journaling really helped, writing everything down and yeah, so it brings back a lot of emotions,

[00:16:28] Cheryl: yeah. No, and did you also use art? ’cause I not use art, but did you also, I know that you’re a wonderful artist, for anyone listening you can she’s got some amazing art.

[00:16:39] Cheryl: And did that, I’m just curious if you, if that was a helpful kind of coping tool or 

[00:16:45] Yasmin: Yeah, I think the art did, but I think more so, ’cause I am also a poet and I love to write. I think poetry was a really good outlet for me. So just writing down how I felt and putting it into words and writing [00:17:00] poems. And also at the time then I also wrote my first poetry book. And I think that was just a way for me to let everything out and also to focus on something that wasn’t just about my health and not just about all these diagnoses. I wanted to do something that gives me joy. So I think, yeah, the art definitely gives me joy and writing it down and being able just to get it, get it out my head and onto paper really helps.

[00:17:23] Yasmin: So, yeah, definitely. 

[00:17:26] Cheryl: That’s, yeah, that’s I’ve found putting things into words too has really helped, whether those are words that you are speaking to your therapist, maybe during talk therapy or words that you’re just writing to yourself like in a journal. I think there’s something about putting your feelings into words that makes ’em feel more, I don’t know, what would you call it?

[00:17:47] Cheryl: More like real and more like something you can grasp your head around rather than just kind of the swirl. Right? 

[00:17:55] Yasmin: Yeah. And I think also to unburden all the thoughts that you have sometimes. ’cause it can be [00:18:00] so overwhelming, can’t it? And just to write things down. I’m really big on journaling and I think, when I’ve got so much going on in my head, writing it down and then putting it to one side and then it’s kind of out my mind, well, rather than ruminating on it and procrastinating on things, which I do quite a lot. ’cause as I said before, I’m quite, I have that anxiety, so sometimes I do ruminate quite a lot. But when I’m in a zone of painting and when I’m doing those things, I enjoy painting and writing poetry.

[00:18:29] Yasmin: I don’t think, because I’m so in that moment, I’m just doing something that I really get so much joy from and it’s like an outlet, it’s, it is an expression. You are expressing yourself, whether that’s through painting or words, so that’s really, that’s one way that I think I use a tool for my anxiety and also something for me.

[00:18:52] Yasmin: It’s my time to do something that gives me joy. 

[00:18:57] Cheryl: What, if you don’t mind sharing, like what are some of the things [00:19:00] that therapy in your experience or talk therapy helped you with for your anxiety? Because I personally have also done it and it really helped. 

[00:19:11] Yasmin: Yeah, I think I, when I, before I got my diagnosis, I was always one of those people that wanted to be in control of everything, but in reality, we’re not really in control of a lot of things that happen in our lives as, even now, what’s happening in the world that we’re living in, we’re not really in control. I think what we are in control of is how we behave, how we treat people, our thoughts. But I think it really helped me, to not look at everything in, in a black and white way, and also the ruminating ’cause I do a lot of that and I also, I am an overthinker. So I think it really helped me learn some tools just to be in the present moment. Not overthink the past, don’t think about the past too much.

[00:19:52] Yasmin: Don’t overthink about the future. In terms of like our health, we kind of worried all, how are we gonna be in five years time with the rheumatoid? Well, I don’t know [00:20:00] what, what’s gonna happen in five years time. So let me just focus on now. 

[00:20:03] Yasmin: That, let me take my medication, let me do my mindfulness, let me do my exercising, let me do all the things that are helping me.

[00:20:11] Yasmin: The diet, the support, pacing myself, and I think also talking to somebody and not feeling silly about the things that I think about. ’cause sometimes you might think, oh, why am I thinking like this? Is there something wrong with me? But no, there’s not, there’s nothing wrong with you because you’ve been through so much and going, having an autoimmune condition really does change your life.

[00:20:34] Yasmin: ’cause I think you probably all know this as well, and you are listening and you, yourself, Cheryl you kind of mourn that person that you used to be. So you have to learn. You have tools that are in place for you to change how you are now and to not to embrace it, but this is a new me and I have to accept it.

[00:20:51] Yasmin: So, acceptance, accept this is how it is now. I can’t, I’m not that person anymore, but I can still, to use your words, I can still [00:21:00] thrive being who I am now. And and also I think, doing your Rheum to Thrive group was an amazing thing that I did. It was one of the, one of the best things I did actually last year.

[00:21:10] Yasmin: I think it was amazing to meet you. And I met, I’ve met, I met so many wonderful people like I’m still in contact with now, and it’s it’s such an amazing support network as well because it’s people that have the same disease that I’ve got and they get it because nobody will ever get it unless they’ve got it.

[00:21:29] Yasmin: And even our loved ones our family members and friends, they don’t understand it. They try to and they give, they’ll give advice and they’ll try to be helpful, but they just don’t understand it. And I think doing any kind of therapy support group. It just, it’s just a great tool to be able to express yourself and talk and, we can ask each of our questions.

[00:21:49] Yasmin: , I can’t ask somebody else that hasn’t got a rheumatoid arthritis and you’ll understand and we it, it’s just that amazing support and I, say to anybody, join a support group, get therapy [00:22:00] talk about it. And I, and I really love therapy. I’ve done quite a bit and I will continue to do therapy now for the rest of my life.

[00:22:07] Yasmin: ’cause I think it’s just a way of me it is something in my toolbox that’s helping me. And I think it really makes a big difference. 

[00:22:15] Cheryl: Yeah. Well, th thank you for sharing about the Rheum to Thrive Group because it is all right now, like word of mouth marketing, how I get the word out, because it is such a powerful experience whether you get a support group through, there’s many different avenues.

[00:22:30] Cheryl: There’s different nonprofits that provide ’em. There’s mine, which is kind of a blend of a support group with a traditional like teaching, kind of self-management program where you learn the tools and then you talk with other people about like, how are we actually gonna use these tools? Because I could tell you all day long about how to, how you should, how coping tools for anxiety.

[00:22:47] Cheryl: But, and then actually using them as the hard part, like you were saying, learning. Yeah. Yeah. So helping each other normalizing it. Yeah. 

[00:22:55] Yasmin: Normalizing it and again, just I’ve met so many wonderful people and [00:23:00] if I’m having a day where I think, oh, I’ve got this strange symptom today, I can ask somebody and they’ll be able to say, oh yeah, I’ve had that symptom.

[00:23:06] Yasmin: Because with rheumatoid, as we know, and we all experience it differently, but the, it’s it’s very strange. You can get some strange symptoms. Sometimes you can feel amazing and you think, oh, I feel great today. And other days you just feel awful and recently I’ve been overdoing it.

[00:23:20] Yasmin: I’ve not been pacing myself and I think I’ve been paying for that. So I’m trying to use my toolbox, and pace myself a bit more, not overdo it. ’cause when I’m feeling good, I do too much.

[00:23:34] Cheryl: Totally. And it’s. It’s normal and almost rational to do that sometimes because it’s such, sometimes it’s very random when the fatigue will flare up anyway, so even if you do all your pacing right, you might feel fatigued after anyway. So you might sometimes, I think to myself, I might as well just go all out and use all my energy as while I have it because 

[00:23:56] Yasmin: Yeah, 

[00:23:56] Cheryl: I dunno. So, it’s very yeah, everyone by the book will say you need to slow [00:24:00] down and pace yourself and, but in, in the real world it’s much more of a difficult process.

[00:24:05] Cheryl: But I, I think we’re all, I don’t know if it, if this is validated by research, but in my experience. People who have anxiety like you and I also, there’s a big overlap between people who are maybe like perfectionistic or hard on themselves. Like I’m so compassionate for other people and it still have to coach myself through sometimes being self-compassionate.

[00:24:27] Cheryl: I mean, my parents were really good growing up. I really learned, like I, it’s not like it’s not from any sort of they never were critical. And so it’s all just my internal personality of just kind of wanting to be perfect. So, so, like you were saying with perf, with pacing, it’s like sometimes I’ll be like, oh my gosh, how did you do that to yourself?

[00:24:46] Cheryl: It’s like you have to remind yourself that, you’re a human. You all make mistakes. Yeah. 

[00:24:52] Yasmin: That, that was another good thing I got from doing therapy. My therapist said to me every day, I want you to do something for you. [00:25:00] Because, we’re busy moms, we’re busy working, we’re busy doing so many other things for other people that we tend to forget about ourselves. And especially when you’ve got an inflammatory disease. You have to really look out for, look at, look after yourself. And my therapist did say that to me. She said, I want you to do something for yourself every day.

[00:25:17] Yasmin: It could be the smallest thing. It could just be sat down in the garden with a cup of coffee listening to the birds. It could be anything. And for me, I do love nature and I do going for walks and I like, so I’ll. I’ll book a massage for myself or I’ll read a book or I’ll just do something for me every day.

[00:25:35] Yasmin: It could be something very small and I, and it just makes me feel good. And I think you mentioned self-compassion. I was really bad at that. I never really had a lot of self-compassion for myself. But now I do have a lot more self-compassion and I’m kinder to myself. I use a lot more kind words to myself now, and I’ll do more for myself.

[00:25:54] Yasmin: And I think I’m getting better now at saying no. No, I can’t do this today or [00:26:00] no, you can do that yourself to my children. ’cause they’re all growing up now. They’re growing up now. And I’m like, no, I can’t do everything for you. You’re quite capable of doing it. And even though I wanna do it for them, no, it’s, I’m having an hour to myself now.

[00:26:12] Yasmin: I’m going to sit for an hour or I’m just gonna lie in bed and listen to a podcast or read a book. And I think it’s so important to put ourselves first because I think we don’t, and we have to, I think it, that comes with practice and I think I’m getting a lot better at that now. If I look back from even a year ago I’m really doing a lot more for myself now, and I feel good about that.

[00:26:36] Yasmin: I think that’s not being selfish. I think that’s being, ’cause if I am well, then the people around me will be well, if I’m happy, the people around me will be happy. And again, self-compassion. It is something that takes a lot of practice. 

[00:26:52] Cheryl: And I think it come it in a weird way. I’m just making this connection right now.

[00:26:56] Cheryl: ’cause the next thing I wanted to ask you about was advocacy. And I [00:27:00] think in a way it’s a manifestation of having good, I know this word is used overused, but self-esteem. But advocating for yourself is a way to show, in a weird way, like self-compassion or self-esteem to say I am worth advocating for self-worth is probably the better word, right?

[00:27:17] Cheryl: Before I used to be such a people pleaser that I would not advocate for myself in appointments. And people are like, wait, what? You wouldn’t advocate? ’cause I’m so normally like extroverted, outspoken. I don’t have a lot of shame. Like I don’t get embarrassed easily, but I’m like, what? But all that. But what overrides all that is that I just wanna be, I want everyone to like me, and I don’t wanna, I wanna, I don’t wanna be a problem for anyone, so I’m like okay.

[00:27:45] Cheryl: Even though i’m not shy. I don’t wanna make a problem for the doctor or the nurse or anyone else. So I did not advocate for myself for a long time. My mom is, was my advocate when I got diagnosed when at 21 years [00:28:00] old. So anyway. So it can be a long journey to learn to advocate for yourself and specifically in the medical context, but also just overall in life.

[00:28:09] Cheryl: So I’m curious. Yeah. What did you wanna share about that? 

[00:28:12] Yasmin: Yeah. Yeah. I totally agree with that. Because I think when you go to see a doctor or rheumatologist, you go in there and you think, they’re the professionals. They’re the ones that have this degree, they’ve had the education.

[00:28:23] Yasmin: But in actual fact, we are the professionals because we are living with this disease, we know what it’s like we’re living with the pain every single day. I think my first time, the first time I advocated for myself was when I actually saw a face-to-face rheumatologist and actually she was quite rude.

[00:28:42] Yasmin: She was a specialist rheumatologist and she was really quite rude to me. And I don’t know if it was because I might have come across as quite not timid, but maybe, I don’t know, maybe I came across as, not confident. So I was asking a few questions. When you first [00:29:00] start a medication, you have questions.

[00:29:02] Yasmin: Because it is quite overwhelming, isn’t it? You start, , you’re injecting something into your body and you wanna know what it is. What the side effects are. These are normal questions that are asked.

[00:29:12] Yasmin: And back then I didn’t have a list of questions because it was the first time I didn’t have a list of what I wanted to ask.

[00:29:19] Yasmin: So when I actually left there and came home, I was like, oh my God, I don’t even, I didn’t even ask half the things I wanted to. But she was quite rude to me and she was quite patronizing and she actually did say to me I’m not your, I’m not your therapist. And I thought she was like, she actually said to me, this is not a therapy session.

[00:29:37] Yasmin: ’cause I was asking questions about the medication. Looking back now, this new me would’ve actually really stood up for myself because I didn’t, ’cause I was quite I didn’t know what was going on. I was quite timid at the time. I didn’t really have that confidence to speak up for myself.

[00:29:55] Yasmin: And I was really rude. But I left there literally not knowing much. And then [00:30:00] when I went back again, I wrote all the questions down what I wanted to ask, because you know yourself, we see a rheumatologist, what, twice a year for 15 minutes if we’re lucky, even, on the Rheum to Thrive we do have all those worksheets, don’t we?

[00:30:14] Yasmin: And we write, we can write everything down. It’s just good to go there prepared. And I would say really, as the time’s gone on and it’s been 10 years, I’ve really gone in there now and I speak up for myself. I’ll give you an example of a time when I advocated for myself and I really spoke up for myself.

[00:30:29] Yasmin: So when I first got diagnosed I didn’t get any scans done straight away. But then when they said, yeah, you do have rheumatoid, I did get some ultrasound scans on my hands and my feet. And this was nearly nine years ago now. So recently I went back to see the rheumatologist and I said, look, my hands are getting really bad.

[00:30:47] Yasmin: My wrist, really sore. I’ve got like nodules all over my wrist. I would like some scans done. And she said to me, oh, it’s not something we do. We don’t do it. We don’t do it all the time. And I was like, well, I want it [00:31:00] done and she actually looked at me to say, well, I’ve just told you we’re not doing it.

[00:31:05] Yasmin: And I said, no, I really wanna I want to get it done. So that kind of got dismissed and then I emailed them. And I wrote to them and I said, look, this is what I want doing. And anyway, now I do have an appointment now. So luckily, I think that, I think speaking up for yourself is really important because sometimes we can get told, no, you don’t need this. But in actual fact, yeah, I do need this because it’s new, it is changed. My hands have changed from nine years ago. Things have progressed and I want to know what’s going on. And I think it’s important just to learn to be confident. If you are, I usually go to my appointments on my own, but if you wanna take somebody with you. You can do so.

[00:31:44] Yasmin: Just if you need a bit extra support. I think now I’m a lot more confident now because I’ve learned what works, what doesn’t work. And when I’ve sort of been waiting for appointments and kind of being dismissed by, the health professionals, I have actually [00:32:00] taken it to something that we call here in the uk, it’s called Pals, so it’s PALS, it’s Patient Advisory Liaison Services. And I’ve initiated complaints. And by doing that, I’ve actually been seen quicker. I’ve got appointments, I’ve got things that I needed to get done, have been done because I’ve stood up for myself. I’ve advocated for myself, and I think it’s really important because we’re the experts in our disease, and if we want to get something done, we have to keep pushing it.

[00:32:29] Yasmin: We have to, we are, we really have to keep pushing it. 

[00:32:33] Cheryl: And I know our systems are really different, like between the UK and the United States, but that is one similarity in that, if you just roll over and let them and just kind of take whatever everyone’s giving you, you are not going to get the best care typically, I would say.

[00:32:51] Cheryl: So, yeah. Researching, from high quality sources and learning about, okay. Yeah, there’s a lot of arguments for imaging like ultrasound, [00:33:00] to track progression and of the disease to see whether your medications are working. My doctor uses that to help us figure out what state my rheumatoid arthritis is in.

[00:33:10] Cheryl: If I’m feeling some pain, but I’m not sure if it’s inflammation pain or if it’s from something else. So, but you don’t, it’s like you miss a hundred percent of the shots you don’t take, you don’t get, 

[00:33:20] Yasmin: yeah

[00:33:21] Cheryl: and sometimes there is an act, a barrier that you just can’t surmount.

[00:33:25] Cheryl: Like they, you can’t just get everything you ask for. You have to be reasonable too, just for people listening. Yeah. I’m not saying that what you were asking for was unreasonable, but you know, I mean, we all would want to have like our own in my ideal world to have a personal doctor that followed me around 24 7.

[00:33:39] Cheryl: I could ask things all the time, but we don’t get into that. But you don’t wanna just give the bare minimum standard of care either, so, 

[00:33:47] Yasmin: yeah. Yeah. I mean, I’ve seen so many health professionals that are amazing and they really, they listen, they’ll take their time, they’ll, they, you just feel like you feel understood.

[00:33:56] Yasmin: You’ll lead there and you’ll feel really good. And then I’ve had the other side [00:34:00] of it where I’ve had very patronizing healthcare professionals who are being really rude and just kind of want you out the door straight away and don’t listen to you and, patronize you and speak down to you.

[00:34:11] Yasmin: And I think, I mean, I remember once I went to an appointment and I was asking, look, this needs to get done, this needs to get done, and I need you to test my urine sample. And they were like, oh, are you a doctor? And I was like, no, I’m not a doctor. I just I know what’s expected now because the more we go to these appointments, the more we know what’s expected.

[00:34:30] Yasmin: And I think as time goes on we become a little bit more of an expert in our care as well. So yeah, I just think. 

[00:34:37] Cheryl: Yeah. Sorry. 

[00:34:38] Yasmin: I was just gonna say, I think it’s, I think it’s a good thing to speak up for yourself. It’s not, it’s, you’re not being rude, you’re not being demanding.

[00:34:47] Yasmin: You just want the bare minimum. You just want to be listened to. You just want the help. Because you know when your body’s changing. I know that my hands are getting quite bad at the moment, whether that be because it’s, with the cold weather, or maybe I’m just [00:35:00] overdoing it, or I may need a higher dose of my medication.

[00:35:02] Yasmin: I don’t know. But you know, I, and you know what’s happening in your body and I know that the moment I’m having really bad problems with my hands and I, and we need our hands for everything, so I really need to get this sorted. 

[00:35:15] Cheryl: Yeah. I’m sorry to hear that. And that is definitely where rheumatoid arthritis specifically tends to be the most active, as in the kind of the knuckle joints, which the official word is metacarpal, phalangeal, mcps, and then the proximal interphalangeal, which are the one, one up, not the one all the way at ear fingernail, but between your fingernail and your knuckle, that one plus the main MCP, the knuckles is, are the ones that really tend to get affected by RA and they cause that kind of deformity

[00:35:44] Cheryl: where called Ulnar drift, where everything starts drifting towards the pinky side of the hand, and it’s, there are times when, you know. Even when, we’ll never know, right? Even if you had been diagnosed and treated right away, you might have more, what they call like [00:36:00] refractory rheumatoid arthritis or like difficult to treat rheumatoid arthritis, where some people, it just doesn’t, they don’t respond as quickly to the medicine, so it’s hard without it’s hard to grieve on the one hand, like yes.

[00:36:11] Cheryl: Reason would suggest that if you had gotten treated faster. Most likely you would definitely not have had the degree of impact that you’ve had both systemically Yes. In your joints, but it’s also hard. It’s, we don’t have a, we can’t do a perfect scientific, double-blind control trial, right.

[00:36:29] Cheryl: Where there’s the, we clone you and we have one of you that gets dedicated, one of you that doesn’t, and then we can compare those. We don’t have that unfortunately. Yeah. Yeah. What was I gonna, oh, sorry, I, 

[00:36:41] Yasmin: yeah, and I was just gonna also say. 

[00:36:45] Yasmin: I was just gonna say, only had a brain fog moment. 

[00:36:49] Cheryl: Yeah, you go ahead.

[00:36:50] Yasmin: Oh yeah. So, yeah, I was just gonna say, so I do have the rheumatoid, I also have rheumatoid vasculitis and I also have schrogan, if I pronounce that correctly, the [00:37:00] dry mouth condition. 

[00:37:01] Cheryl: Yeah. Sjogren’s. It’s dry glands. Like throughout your whole body. Yeah, 

[00:37:05] Yasmin: yeah. Even my eyes were really dry.

[00:37:09] Yasmin: So I have, I think that’s three autoimmune conditions now. I’m hoping to not get any more. And yeah. So I feel like for me personally, I mean, everyone’s different, so. I always think, oh God, what’s this year gonna bring? Because it’s just been like every year something new sort of added to the ever-growing list of diagnosis.

[00:37:27] Yasmin: I do have, I have actually had another endoscopy done and I have a, I’ve found out I’ve got a hernia and I’ve got a dysmotility in my esophagus. And my gastroenterologist actually said to me, it could be RA related. It might not be, we just don’t know. We just don’t, 

[00:37:45] Cheryl: well, and it’s actually really common to have.

[00:37:48] Cheryl: Dysautonomia. If you have Sjogren’s in specifically or rheumatoid arthritis, you’re more likely to have dysautonomia, which is the umbrella term for disorders of the autonomic nervous [00:38:00] system, which is like your automatic nervous system. That’s how I remember it. The automatic things you’re not under, you don’t, they’re not under your conscious control like your motility. So like I have gastroparesis, which is 

[00:38:09] Yasmin: Yeah, 

[00:38:10] Cheryl: a motility disorder that affects the whole GI tract. And so it could be from either one of those, but I’m sorry you all, it’s really hard to have issues with your stomach. ’cause it’s such a pri, like you said earlier, it’s such a primal thing to want to eat.

[00:38:23] Cheryl: I mean like kind of the first thing we do right when we come out of the womb is we, 

[00:38:27] Yasmin: yeah. 

[00:38:28] Cheryl: Food. So it’s like wanting skin to skin contact and food are like the most primal needs. 

[00:38:36] Yasmin: Definitely, I think I’ve learned just to sort of adjust now and I think acceptance is a strong word, but I think I’ve accepted.

[00:38:46] Yasmin: All these diseases now, and I’ve sort of learned to live with them. It doesn’t mean I like them and I’m happy with them, but I’ve learned to live with them and I’ve learned to still enjoy life. I want to just put that out there, that even though we have [00:39:00] these diseases, we can still live a full life and we can still have goals.

[00:39:05] Yasmin: We can have desires, we can have dreams, we can, I have a bucket list of things that I want to achieve, and one of them actually was to do this podcast, so 

[00:39:13] Cheryl: Yay. 

[00:39:14] Yasmin: It’s done. 

[00:39:15] Cheryl: Yes. No, you’re, I mean, as you’re speaking my language a hundred percent. Keep going. Yeah. I didn’t mean to interrupt. 

[00:39:23] Yasmin: Yeah, I’m just saying.

[00:39:24] Yasmin: When you first get diagnosed with any disease, you think, oh God, this is it. It’s the end. My world’s changed. But you know what? Your world has changed, but you can still have dreams. You can still, I mean, I am so excited this year in spring I’m gonna be having my first art exhibition.

[00:39:42] Yasmin: And I’m really super excited for that. So, yeah, if you dream big, these things will happen if you manifest them. And I’ll be putting a little bit more about that on my social media page for my art page in spring. So it’s something that I’m really looking forward to doing and [00:40:00] it’s been on my book list.

[00:40:02] Yasmin: So many years and so that’s happening this year. So yeah, I’ve got quite a few things that I’m really excited about and I think it’s important to, or, reach your goals, try your best, and don’t give up, because still we have to adapt. I use my hands all the time for my artwork.

[00:40:17] Yasmin: ’cause some days I can’t do it, but that’s okay. The days when I can do it, I’ll do that and I’ll enjoy it and I, I’ll enjoy it even more because I can do it on that particular day. 

[00:40:28] Cheryl: I love that. Well, and you’ve totally anticipated, in a way, you just answered my first question, which is the best words, my, my first of the rapid fire questions, which is best words of wisdom for people who are newly diagnosed.

[00:40:40] Cheryl: I feel like that’s something I say to newly diagnosed people, or that’s a message I try to translate to newly diagnosed people is that you can still live a big, beautiful life with this condition. It’s just gonna look different than how you imagined before. So you. I mean, I don’t know if you have anything else you wanted to say for that.

[00:40:58] Cheryl: Is there anything else you wanna say? 

[00:40:59] Yasmin: I also [00:41:00] say, get the support, use the support that’s out there. Get help, ask for help. ’cause I used to be so bad at asking for help. I try to do everything myself. So yeah, 

[00:41:10] Cheryl: that’s huge. That’s huge. 

[00:41:12] Yasmin: And join the support group. I think a support. Definitely something that I think people should do.

[00:41:20] Yasmin: Whether you’re newly diagnosed or have had rheumatoid so many years, joining a group and speaking to other people that are going through the same disease and struggles. It’s really important to, to connect with people. 

[00:41:33] Cheryl: A hundred percent. I mean, I love that. I, the next question is about favorite quotes or inspirational sayings for those of you watching on YouTube.

[00:41:42] Cheryl: ’cause we do have the videos of all the episodes on YouTube. I have changed my, my wall behind my desk now and I have the, we can do hard things artwork that I got, ’cause that’s one of my favorite quotes and inspirational thingss on tough days is we can do hard things. [00:42:00] Do you have one? 

[00:42:01] Yasmin: Well I do have one, but I was actually looking at yours thinking, oh, I’ll steal that one.

[00:42:07] Cheryl: Yeah, I didn’t make it up. 

[00:42:08] Yasmin: Yeah, it’s. No, I don’t actually know if it’s a quote or it’s more of a verse, but Rumi, if anybody knows a Rumi, the poet he has one of my favorite kind of verses is, I am not this hair. I am not this skin. I am the soul that lives within. And I think that kind of means, embrace life, embrace it. And we go through difficult times. We’re more than just our bodies. We’re more than just our diseases. And just embrace the good with the bad. 

[00:42:41] Cheryl: I love that. That’s beautiful. On another note, do you have a favorite arthritis gadget or tool in your toolbox?

[00:42:51] Yasmin: My favorite tools are definitely gonna be my compression gloves. I’ve got mismatched ones on today, but yes, I can’t be without these. My [00:43:00] ice packs, which I use daily and I do have a couple of gadgets in the kitchen, but yeah, I think my main ones would be in my compression gloves and my ice packs.

[00:43:11] Cheryl: Love that. And I often, that’s funny, I didn’t even think about this till you mentioned it, but I often will have a different one on each hand too. ’cause my hands need different things, sometimes different glove on each hand. That’s the style. 

[00:43:23] Yasmin: Yeah. Mine are for, yeah, mine for the paint, as you can see because I use ’em when I’m painting.

[00:43:29] Yasmin: But mine, I don’t, I use ’em all the time. 

[00:43:33] Cheryl: That’s awesome. Do you have a favorite book or movie or show that you’ve been reading or watching lately? 

[00:43:45] Yasmin: Yeah, so I’ve just actually watched the Life of Chuck by Stephen King. I don’t know if you’ve heard of it. No. It’s on Netflix. And it was a really good watch.

[00:43:55] Yasmin: I would definitely recommend it. I don’t wanna give too much away, so I don’t spoil it, but the [00:44:00] takeaway from the movie is basically, embrace life. Because in life we have love, we have loss. We should have struggles, but at the end of, we’re all going to die. So we have to embrace each moment that we have and really make the best of our situation.

[00:44:16] Yasmin: I think that’s a takeaway from the movie, really, and really good. So I definitely would recommend watching that. I probably enjoyed it. 

[00:44:23] Cheryl: Nice. I’m gonna check that out for sure. And then what does it mean to you to live a good life and thrive with rheumatoid arthritis and your other conditions? 

[00:44:35] Yasmin: For me it’s about family, friends, and spending time with your loved ones and doing the things that you enjoy.

[00:44:43] Yasmin: So, as I said earlier, for me, it’s my artwork, it’s my poetry. Practicing mindfulness is a big one for me. I do have a couple of books that I published on mindfulness. And yeah just, live in the moment really. We can’t forget what’s gonna happen in the [00:45:00] future, so really just embracing, living it, living right now, taking this step by step and just trying to be happy as much as we can.

[00:45:08] Yasmin: And again, just self-compassion and self-love. Very important to look after yourself and, do the best that you can with in a situation that you are in. 

[00:45:21] Cheryl: I love that. That’s perfect. And not to say perfect. Sorry. That’s beautiful. But you don’t, I don’t wanna say perfect to a perf fellow perfectionist because that gets us into a spiral.

[00:45:31] Cheryl: But is there anything else you wanna share with the audience before we wrap it up? 

[00:45:38] Yasmin: No, I think that’s everything, really. Yeah, I’m just glad that I could share my journey and I would just say, life’s so unpredictable. We don’t know what’s gonna happen. So, just make the most of the situation that you are in and enjoy it and connect with others and be kind to yourself and be kind to, to everybody else.

[00:45:58] Yasmin: And that’s it really. [00:46:00] 

[00:46:00] Cheryl: I love it. I love that. Well, I’m gonna put all of your links that you’ve mentioned and some of the research that I mentioned too about like early aggressive treatment. I’m gonna put all those in the show notes, which are always on the Arthritis Life website and linked in the the show notes section of the podcast, but is can you let people know where they can find you online in case they wanna follow you right now? 

[00:46:22] Yasmin: Yeah, so, so my Instagram is at the listening canvas and I also have my own online store at Etsy at the listening canvas. So you can just follow me on Instagram.

[00:46:34] Yasmin: I’m not on any other social media other than Instagram, so yeah, you can find me there. 

[00:46:39] Cheryl: Wonderful. Well, I’m really glad that we were able to check something off your bucket list today. Thank you. And that you share your journey. It’s just, you really have, I mean, been through so much and I am just really glad to hear that. You’re kind of at the point, like you mentioned of acceptance is a strong word. I think that’s a really good way to put it. [00:47:00] It’s a word that I contend with kind of every day. I’m trying to reframe acceptance in, in my life as I am. I accept that acceptance is important, right?

[00:47:10] Cheryl: Accept that acceptance is good, but I’m still not always able to practice acceptance in the present moment. But but I’m just, I’m glad you’re, you seem more like at peace with things than maybe in the 

[00:47:22] Yasmin: early Yeah, I think I’m a lot more calmer now. I think when I first got diagnosed, I was a mess.

[00:47:28] Yasmin: I was a big mess and very stressed, and I think we know stress isn’t good for rheumatoid. And so trying to really manage my stress and my, the diseases that I get, hopefully I don’t get anymore, but if I do I can’t control that. But what I can control is how I react and how I deal with it.

[00:47:47] Yasmin: And I think now I’ve got a lot more tools. I’m a lot more calmer. Doesn’t mean I love having these diseases. Of course I don’t, but I know that there’s nothing, it’s not gonna go away. There’s no cure at the moment. I wish there was, but I just have to [00:48:00] do my best and just be calm. I think, just be calm and do the best, stress is a very big trigger and 

[00:48:08] Cheryl: yeah, 

[00:48:08] Yasmin: I think it’s just, we all go through stress all the time.

[00:48:11] Yasmin: Sometimes we can’t, deal with the stress. It could be any kind of stress in life. But I think just trying to be calm is really important. And I think I’m a lot calmer and I think I’m a lot, a bit more at peace with, I mean, I went through all the stages of grief, anger, depression when I first got, especially when I got the cancer diagnosis.

[00:48:30] Yasmin: But I think now I’m a lot more peace with everything that’s happened. So I think it, that’s helped me anyway. 

[00:48:40] Cheryl: That’s amazing. Well, thank you again and we’ll, hopefully everyone will follow you on an Instagram and check out your Etsy shop too. So 

[00:48:49] Yasmin: thank you. Thank you, Cheryl. Yay. Thanks so much.

[00:48:52] Yasmin: It was really good. Take care. 

[00:48:53] Cheryl: You too. Bye bye for now. Bye.

[00:48:56] 

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