Episode 47 Rheumatoid Arthritis at 19

Debbie: Hello and welcome to Inflammatory! with Debbie

Katy: and Katy

Debbie: We’re delighted to be joined today by Hansa. She is a parent of two, works part-time in finance and she was diagnosed in her teenage years with rheumatoid arthritis. So Hansa, thank you so much for joining us today. If you could just tell us a little bit about yourself and the symptoms and your journey to diagnosis.

Hansa: Yeah, you’re welcome. So, I was 19 when I was first diagnosed. I finished my first year of university living out, enjoying the student life as you do, and then come towards the beginning of my second year. Just started feeling a lot of pain that wasn’t what usually I would go through and stuff. Let me go see the university doctor and then he did some checks and he did a blood test and then came back and got the results and he said you’ve got rheumatoid arthritis and then I was like all right okay I don’t know what to do with that information because I’m not really I guess I didn’t really hear about that or maybe I heard about arthritis but maybe in the elderly so I didn’t think gosh I’m 19 so he just set me on my way he said he’ll refer me to a local hospital. And then gave me some painkillers and then off I went. And then I was like, okay, I’ve got this disease. What do I do with it? I didn’t really know what to do. I was at university and it was just, should I just carry on? So, kind of carried on with the pain. everything was hurting by that time. my shoulders, my knees, I was very slow at walking and I don’t know, I just felt a little bit isolated. Then I used to go home on the weekends. So, when I told my parents over the weekend, they, guess they were,

Debbie: What was their reaction?

Hansa: I don’t, I think they’re like, oh no, no,

Katy: Had they heard of rheumatoid arthritis before?

Hansa: I don’t think they did either as well. So, and also like being an Asian background, you kind of keep these things to yourself. You’re like, don’t tell anyone, there must be a cure for it. Cause you know, you have to eat right and do all these I don’t know. think I just maybe was, I was on my own, okay, with this. And then I was like, gosh, what do I do? So just carried on as normal. I think I just felt lost and I didn’t really think what the actual disease was. I didn’t do any research on what it was. I’m 19. I don’t want to deal with this kind of stuff.

Katy: And you were at university, so, and how did you talk to friends about it or did you keep it to yourself?

Hansa: A few people knew, the girls that were showing accommodation with, they knew about it, but also, I think they didn’t really equally know what it was So they helped as much as they can. I think I did what I had to do at university. in my third year, I remember I stayed at home and I travelled and didn’t really socialize. I just came to do what I needed to do and then went back got through it and then graduated. I never thought about it afterwards and then I got this disease and it was so hard. I think I my mum had to hand me plates of food because I couldn’t walk up to the everything was, I don’t know I just think about it, and I think you know gosh I might have blanked out a few of the things that I was saying to myself. I’m like, I can’t live like this. How, what am I going to do? Like, how do I get a job? How do I find a husband or have kids? And everything just goes through your mind. Cause at 19 is you’re just starting to live your life. And I, then I the local hospital. So I went to see the rheumatology nurse and doctor, and they gave me the medication just to start off with. I think that was helping a little bit. But then also my mum was like, oh, well, let’s see if we can maybe take you to India and see what they can do to help you. And they over there, they’re like, yeah, yeah, we’ll cure it. We’ll just give you this and I don’t know, I guess we just didn’t realize what was going on. So, my mum would like massage my hands and my legs and everything to make know, wasn’t in too much pain. At end of the day, just had to this and around it. And eventually I found a job, but I didn’t tell them. I didn’t, think I was scared. Yeah. was scared to tell them.

Debbie: that’s a big thing. We’re brought up to go to university, get the job, as you say, then get married and have the family. That’s our life planned out for us. And when we hit these curve balls, it’s just like, let’s not tell anyone because we don’t want to ruin.

Hansa: Yeah

Debbie: I must admit, I never really told my employers either. But just going back to when you were diagnosed, that actually give you any information about what rheumatoid arthritis is or the other invisible symptoms that you can get and how to process everything?

Hansa: No, I don’t think I remember receiving anything, maybe a leaflet possibly, nothing that I think I could go on do the research and I didn’t even think look up on the internet to what nothing, I got nothing. I was just, I think I was lost. Yeah, I was, was so lost.

Katy: Yeah. Gosh, that’s so hard.

Debbie: I’m not surprised you felt lost.

Katy: So, did the medications not really help by the sound of it?

Hansa: It helped a little bit, but it helped me get out of bed and I was still in pain, like a few days I was in pain sometimes, but just managed through it. a smile on my face and just fobbed it think it was more.

Debbie: I think Katy’s done that a few times.

Katy: Yeah. So how did you kind of manage with the daily pain? What sorts of things did you do?

Hansa: Nothing really I just kind of have to this is my life I have to kind of

Katy: Grin and bear it.

Hansa: Yes so like for example like if I was have to get up to go to the photocopy I couldn’t just instantly get up you have to wait until so I would just pretend though I was just looking for something on my desk or hold on I need to just check something just I know I’m looking back at it and I’m thinking why did I do that I should have just been upfront and then I muddled through got another job and did the same thing as well. And eventually I found my husband. And then I was like, need to tell this guy because it was starting to get serious and I need to tell him about this is he going want to break up with me or I just no idea. I took up the courage, and I told him and he’s okay, that’s fine. He’s kind of just shoved it off. told his parents and his I think I know somebody else with that disease. And they were happy with it. They were like, they accepted me. They didn’t think I was tainted or I don’t know, just felt like, I think maybe I built it up on myself in my mind, isn’t it? Yeah.

Debbie: But the thing is that that should be the norm. Katy and I mentioned this last week on the episode that you shouldn’t have to feel that you have to justify yourself for having this disease. But actually, it’s great that your husband was just like, fine. I like you for who you are. That’s part of you. We’ll deal with it.

Hansa: Yeah. I was like starting to see a future. I was like, wow. And then we decided to have kids. that’s when I think the drugs that I was on, I wasn’t able to, I think I needed to come off them for six months before even starting and planning to get pregnant. So, I was like, okay, fine. drugs for me. then during pregnancy, I think that was probably hard because you’re in, I think I used to have a lot of shoulder pain. I again, just bared with the pain did the pregnancy and she came out and it I had help from my mum as well. And so that was quite good when my first, my daughter was born and stuff. and then, okay, let’s have another

Debbie: Yeah, because I know, why not? I know there’s lots of research going into pregnancy and, being on medication because I think most people assume that you go into remission when you’re pregnant. A few people do, I certainly didn’t. And it sounded like you didn’t either because obviously you were still in pain.

Hansa: No. No, I didn’t.

Katy: Okay. Yeah, because I had a specialist obstetrician, that’s the word, isn’t it? So I was put under high risk because of my rheumatoid arthritis. but you weren’t, so it’s interesting.

Hansa: No, I wasn’t. I think they just, because I didn’t speak up for myself and they didn’t, I think with the how the NHS is, you just get lost in the system, don’t you? I just went along with it and

Katy: Each hospital has different ways of doing things.

Hansa: Yeah, so the one I was at was heavily saturated that so many people in the waiting list, I would wait up to at least two hours just for my appointment sometimes.

Katy: did you manage that with working?

Hansa: Well, I just said I had a hospital appointment, and they just didn’t really say much. But I’m trying to make the appointments towards the end of the day so it wouldn’t take too much time out of the actual working day. And then yes, and then I, she was born.

Debbie: And then after you had your first baby, then you said you were going to have a second. During that pregnancy, did you go into remission? And obviously having a toddler is even harder to deal with.

Hansa: Yeah. I don’t think I went into full remission, dealing with a two-year-old I think my mind was a bit more occupied on what I have to do with her and getting her into a routine. And then also I was working during pregnancy as well. I did have I think I do remember having the odd flare up. But again, I managed how I did with the first one, which is try, to manage on my own and then if it got to the point where I needed to take something, I would just take paracetamol. But yeah, I think the second one was very, very difficult because you’ve got this two-year-old who just wants your attention all the time and I’m like, oh gosh, and she wants you to carry her and I’m like, I’m just carrying another child in my belly. And it’s just, it was a lot too. thinking back, I think it was. Maybe it was a bit easier because as I said, my mind was a bit preoccupied with the two-year-old.

Katy: And once your son was born, how did you find that juggling a two-year-old and a newborn?

Hansa: We were in the process of, moving. So, then I moved back in with my parents. So, I got a lot of help there. So, I think that was probably a bit more easier because all I could do is focus on the newborn.

Hansa: Five months later, I had got the courage and said, okay, fine, let’s move now. So, we moved to this area and I just, I knew nobody and it was right. I need to get her into nursery so I can have a few days just without her. She was very energetic, two-year-old and it was too much so I couldn’t handle them two. And my husband’s works very crazy hours at that time. He was training, so he would do like weekends or night shifts and long days. Yes, it was very hard actually and I was like okay what can I do? So, I just went to the park every day. I just did some baby clubs, did what I could and then…

Katy: Yeah, okay. And how did you find baby clubs sometimes they can be quite active, can’t they?

Hansa: Yeah, so I focused on keeping my two-year-old occupied. So, my son, he would just sit in his pram, and he wouldn’t be whinging if you give him a toy or something. So, he was okay that way. So, he would just sit in the pram while I did the class with my two-year-old and she would use up some of her energy that we did and then we would just live in the park. I lived in the park throughout winter. Anyway, it’s just, I didn’t know anyone else that I’ve got.

Katy: And how was your inflammatory arthritis?

Hansa: It was okay actually. Yeah, because I moved, I changed hospitals and I saw a consultant there. So, she said, oh, you’re young, you’ve got two kids. I’m going to give you biologic. The nurse came, showed me how to do it. And oh my gosh, it was a miracle. It was like, my symptoms are just gone overnight. They were there. I obviously had flare ups, but I could manage a bit more better because of what I was dealing before with the pain. was something I could just put to the back of my mind and then just get on with the day to day that I needed to do. But yeah, that drug, my gosh. It’s like…

Debbie: It sounds a bit like you, Katy, because I think you were saying that…You didn’t realize you were coping okay, but until you changed medication, actually you probably weren’t. Yeah.

Katy: Yeah. I suddenly realised how much I wasn’t maybe coping okay on the other medications because suddenly I was like, this is what it feels like to be able to do things properly. Yeah. Yeah.

Hansa: Yeah, be able to get up without being in pain, not having to deal with this constant throbbing pain in all your joints. And yeah, it was just like, didn’t, guess I didn’t know any better thinking this is my life. So, I just had to just put up with it.

Debbie: Yeah, well, that’s the thing. You don’t really, you take the medication that you’re told to take, and you just assume this is now my life and you cope with it. Yeah. And it’s not then until sometimes then you change that medication. My gosh, I can go and do things now, which is why, just what we’re trying to do as the charity is to really work with researchers to try and get away from this trial and error with medications. There are more medications out there. We need to get away from that and actually say if there’s blood tests, there’s synovial biopsies, whatever information we can get to say, right, we know that this medication will work for you. And so, once you get that diagnosis and then you start the right treatment, your life can continue and it should continue. It shouldn’t have to be that barrier that it is. And it’s amazing that, you you’re now on that treatment. But for me, it’s just gutting that you went through all of that and still in pain.

Hansa:  Yeah, it took a long time, and I just think pain is just part of my life now. Every day is just a little few niggles here and then, but you just, you have to just carry on as normal,

Debbie: And then did you find obviously having two children and moving away? how do you mentally cope with that? Cause I suppose your support system was with your parents, and you moved away from them. How’d you cope with that?

Hansa: Yeah, I think I didn’t. I think I just carried on. I think I got into watching TV programmes. I think that was my comfort, especially during the winter as well when it’s so cold. just watching whatever I could just to keep my mind preoccupied. But yeah, I don’t know how I coped. I think I just did it. It probably was very draining as well, and it didn’t help that I didn’t actually seek out help could have. I should have spoken up for myself, but I just thought this is my life. This is my disease. I just have no help. There was no help for me. So, it’s just, I just had to deal with it. So that was it.

Katy: It is sad actually that you felt that there was no help out there for you.

Hansa: No, and also, I didn’t seek help as well and I just I think I didn’t know how to. There wasn’t there wasn’t all this what’s available now that that I don’t think that was available to me. I don’t know the nurses didn’t really inform me about anything. It just they just kind of tend to just give you leaflets and then that’s it really, isn’t it? there’s no. Yeah.

Katy:  Yeah. And I think that still happens today that people are given the diagnosis and then they’re given some leaflets that might be 10 to 15 years out of date from what I’ve seen.

Hansa: Yes, I think they need to give you some information where you find other people with this disease and to help you. Maybe there’s a group that you can join. There was nothing there and I just didn’t seek out help.

Debbie: This is also why we’re doing what we’re doing on the podcast and especially you, Hansa, you sharing your story because even if you’re not ready to actively talk to people about it, you can just listen and our stories resonate with so many people. We get it. We get everything that you’re going through because it is hard. And as Katy, you were saying, you don’t get that information. You get the medical sort of information but not actually how do you live your life with it? That’s what people want to know. And hopefully, this is what we’re giving people

Hansa: Yeah.

Debbie: But Hansa then obviously you had two children. How did you talk to your children about living with inflammatory arthritis?

Hansa: So, when they were a little bit young, would be like, if I point to the joint that was hurting, said, this is hurting a little bit. So, you know, mummy is a bit sensitive here or, you know, don’t touch me or jump on me or something. Just I’m going to be a little bit slow today. Just slowly, they may have understood that. And then as they got a little bit older, I told them this is what I have rheumatoid arthritis. My body is attacking my joints I need to do regular blood tests. So, I’ll take them with me to have the blood test. And my son was very interested. He wouldn’t look away. My daughter would just turn her head when they were in there taking the blood test. a blood test and yes, and it

Katy: I do think it’s brilliant because at some point in everybody’s life, they’ll need to have a blood test. the fact that you’re exposing them to it is really good.

Hansa: And it doesn’t hurt so they know that I’m not in pain and it was just taking them to my appointments if I could just make them aware of how I’m going about with this. And then it just gradually, and now they’re a little bit older so they do know it that, some days if you have a flare up, they’ll feel, okay, let me maybe help her with the housework a little bit more instead of…just being kids.

Katy: Yeah. Yeah, yeah. What chores are they best at?

Hansa: I think maybe like helping with the laundry, that’s quite good. And my son’s quite good at like doing the sweeping and the hoovering if he needs to be as well. So just little things, but I think that’s a good win for me anyway. So, it teaches them. Yeah.

Katy: No, 100%.

Debbie: Yeah, take what you can. Wait until they’re teenagers. Very, very different then. But yeah, make the most of it.

Hansa:  I know. Yeah, I’m not looking forward to that. I think my son is, he’s a mummy’s boy, so I think he’ll help me, even if he’s a teenager. Yeah.

Katy: Boys always are, I think.

Debbie: I wouldn’t know got two girls, but I think what, obviously it’s not great having inflammatory arthritis at all, but knowing how your kids will be with other people, they’ll be there with so much more empathetic and understanding that, you know, everyone isn’t perfect.

Hansa: Yeah.

Debbie: And, they can understand that from such a young age and, work with you and help support you. And that’s the skills that they will learn from a very young age to take into their adulthood.

Hansa: Yeah, so I think, yeah, this is one of the positives to come out of my diagnosis as well. So just be sympathetic to other people because you may look normal from the outside, but you may have all the other underlying conditions that, nobody knows about. just be, yeah, it’s hard, life, but you have to kind of do what you can.

Katy: Yep.

Debbie: And do you any exercise, any movement at all?

Hansa: So, I think since Covid, I’ve gotten into just doing home workouts. So, I do, I try to do like strength training as well to build the muscles around the joints and a little bit of cardio. But I can’t do the running that you can do, Katy. I just I don’t know how you do the running. Yeah, so I think I’ll do like.

Debbie: I can’t do that.

Katy: I mean, my running has got less and less, but I still do it.

Hansa: 30, 40 minutes. I’ll get up in the morning to do it and then it just keeps my joints kind of active.

Katy: Then it’s done, isn’t it? Yeah.

Hansa: Yeah, it’s done and dusted, and the morning is the best time for me afterwards. I’ve got busy with work and the kids and stuff and then evening I’m just exhausted. I just want to sit and do nothing.

Katy: Yeah. Cause I always used to do my exercise in the evenings when I was younger. And while sometimes if your joints can be stiffer in the morning, I actually find doing some form of movement in the morning then helps the joints warm up and feel better. so, I mean, I guess everybody’s different, but it’s about finding what works for you. Isn’t it?

Hansa: Yeah. And I think, yeah, it does, it helps loosen up the joints in the morning. So I’m not so stiff if I, and if I have a flare up, I try to push it as much as I can. And sometimes it actually helps as well, as well doing the exercise and not just staying still.

Katy: Yeah, it’s that, again, it’s that balance because it’s trying to push through and do a little bit to make yourself feel better, but also, not overdoing it. It’s a tricky one, isn’t it? Yeah. Of course.

Hansa: Yeah, that you do something can injure yourself and make it worse. But yeah, you know your own body. So, I know how much I can push it. So, but yeah, that’s what I kind of do for exercise and then walks. I like to walk as well. So, get some good pair of trainers on and walking.

Debbie: Yeah, I must admit I love…And the fresh air is so good for your mental health as well.

Hansa: Yeah.

Debbie: So today the sun is shining and that really does help a lot. it’s been raining constantly, enough the whole year.

Katy: And the rain is due back. The rain is due back as well, so.

Debbie: shush Katy, you’ve jinxed it now.

Katy: Tomorrow it’s going to rain apparently.

Debbie: I’m going to blame you for that. Katy, please don’t. No, make the most of it today. But I think it’s great that you do strength training and then we did have an episode with Matt Brown about strength training. So please do go back and listen to that.

Hansa: Oh, I haven’t listened to that yet. Yeah.

Debbie: One as well, because it really, highlights the importance of it. But just doing as Hansa also said, just doing what you can But Hansa, if there was any advice that you would go back to yourself when you were at university and you were given this diagnosis, what would you say to your younger self?

Hansa: I would say speak up for myself, find other people with rheumatoid arthritis who you can talk to, people’s experiences, you know, what they do, what they don’t do. I just, and I wish I spoke about it a bit more and I hid it away. I hid it from people, and I hid it from myself, I guess. I just thinking it’s just, oh, I’m just a bit of pain. I’m just going to have to deal with it. I didn’t, yeah, I just didn’t speak up for myself. I wish I did do that. So, yeah, definitely.

Katy: And that’s such a running theme, I think, from most of the people that we’ve spoken to, that either and or they hid it from themselves, hid it from other people, but equally found it hard to speak up and share. And we’ve had quite a few comments on socials as well this month about people struggling to share it with friends.

Hansa: Yeah

Katy: trying to speak out at work It’s always that tricky point, isn’t it? How to share, what to share, when to share.

Hansa: Yeah, I, yeah, But it’s also the fear of people’s reaction, the way they look at it. Maybe they don’t mean it because they don’t know what rheumatoid arthritis is. Yeah.

Katy: Yeah. They don’t understand, it’s still not, doesn’t make it right to be judged because people are judgy about it, I think.

Hansa: Yes, yeah,

Debbie: Very. It’s that word arthritis. That’s

Hansa: that’s true. Yeah.

Debbie: all they’ve heard. don’t know, they probably never might not have heard of rheumatoid or inflammatory, but they’ve heard of arthritis and they just automatically think, yeah, old people, yeah, that’s just, everyone gets it. You’re fine, get on with your life. But it’s not, it is the autoimmune side.

Katy: Yeah, and rheumatoid arthritis that it’s got the arthritis in there because it can be misleading.

Hansa: Yeah, and then I have to follow and say it’s an autoimmune disease, so you have to explain and you just get tired of explaining yourself to people so yeah.

Katy: Yeah, it’s boring, isn’t it?

Debbie: Yes. Yeah, not the podcast though.

Katy: and is completely, you know, they’re here for a reason.

Debbie: Well, this is even if you’ve, yeah, even

Hansa: They relate to it,

Debbie: if you know, you’ve got a friend or a relative or someone, because I went to an event this morning and actually the amount of people I spoke to, they’re like, actually, I know someone who has rheumatoid arthritis or psoriatic arthritis. It’s like, yes, it’s all type of an inflammatory arthritis. It’s different to the osteoarthritis. And it’s just amazing how many people knew someone, but then it’s just like, well, listen to the podcast then, not only you but for them as well, but this is for everyone to really understand what auto immune inflammatory arthritis is like and actually how we live our lives with it. Because as you both say, we look fine, know, to look at us, to find us on YouTube, we probably all look okay. But this time last week, I couldn’t get out of bed. And, know, we have these good times and the bad times. And I think what you’re say as well, Hansa is you make the most of the good times that you have, that you go for the walks and you have time with your family.

Hansa: Yes. Enjoying as much as you can,

Debbie: And that’s what life is about, enjoying those good times. So, thank you so much for your time, Hansa. It’s been absolutely amazing hearing your story. Please do follow and rate the podcast wherever you get the podcast from, and you can download it as well, so you’ll never miss an episode. Sign up to our newsletter at inflammatoryarthritis.org and you’ll get the most upstate information about the episodes, any IA news, research events. Follow us on social media. We are on Instagram, Facebook, LinkedIn and Blue Sky. And you can watch our episodes on YouTube So please download and subscribe to YouTube. But thank you again, Hansa It’s been an amazing story. And until next week, Katy it’s goodbye.

Katy: Goodbye.

Hansa: Bye!

Show notes

In this powerful episode of Inflammatory!, Debbie and Katy are joined by Hansa, who was diagnosed with rheumatoid arthritis at just 19 years old while at university.

Hansa shares her journey of navigating diagnosis alone, hiding her condition at work, managing pregnancy and motherhood with inflammatory arthritis, and finally finding relief through biologic treatment.

An honest and relatable conversation about pain, resilience, cultural expectations, self-advocacy, and raising empathetic children while living with an invisible illness.

Keywords

Rheumatoid arthritis, inflammatory arthritis, autoimmune disease, young diagnosis, university diagnosis, chronic illness, invisible illness, biologics, pregnancy and arthritis, motherhood with chronic illness, strength training, self-advocacy, NHS rheumatology, flare ups, chronic pain, Asian cultural expectations, arthritis support, biologic medication, autoimmune parenting

Key Topics Covered

• Being diagnosed with rheumatoid arthritis at 19
• Feeling lost after diagnosis and receiving little information
• Cultural stigma and keeping illness private
• Hiding chronic illness at university and in the workplace
• Dating, relationships, and fears about acceptance
• Pregnancy with inflammatory arthritis
• Managing flares while raising young children
• The impact of biologic medication and finding the right treatment
• The emotional toll of “just coping” with chronic pain
• Learning to speak up and advocate for yourself
• Raising children to understand invisible illness
• Strength training and movement for joint health
• The importance of community and shared stories

Memorable Takeaways

• “I hid it from people, and I hid it from myself.”
• Pain became “normal” until the right medication changed everything.
• Speaking up earlier is something Hansa wishes she had done.
• Children raised around chronic illness often develop deep empathy and understanding.
• You shouldn’t have to justify yourself for having an autoimmune disease.

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If this episode resonated with you, please share it with someone who may need to hear it. Stories like Hansa’s remind us that we are not alone and that life with inflammatory arthritis can still be full of strength, growth, and joy.

Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content.

For more information, head to https://inflammatoryarthritis.org/