Episode 44 – Pregnant & diagnosed with IA

Debbie: Hello and welcome to Inflammatory with Debbie.

Katy: and Katy

Haffy: And I’m Haffy

Debbie: We are delighted to be joined by Haffy today. So, thank you so much for giving up your time and talking to us today. Just to give everyone a bit of a background about you, Haffy, you were diagnosed with rheumatoid arthritis at the age of 29. Haffy has two children. She works as a clinical pharmacist in a GP surgery, and she teaches pharmacy students at university. I don’t know how you fit all of that in, let alone living with inflammatory arthritis. But as I say, thank you so much for joining us today. If you could just start off by talking about what your symptoms were and then your journey to diagnosis.

Haffy: Yeah, around 2017, we went through a family bereavement. So, my nan passed away. So, we were very, very close to as a family to my nan. it was quite a shock and it’s quite a surprise to all of us. I think that is when it all started. Although I grieved for her, I think the shock of her passing away sort of triggered my symptoms. So, between 2017 up until mid-2019, I just used to get lots of aches and pains. Now I’m 27, 28 at that stage, you know, I’m working part time, no kids at that point. And I thought, it’s just general aches and pains it’s fine it’ll go away. So at first it began with pains in in my legs so I’d go for a walk and then I’d say to my husband I need to sit down because I’m in a bit of pain he’s like it’s probably just you walking the way you are or it’s probably because we walk too much so just have a bit of a rest and then what happened is obviously these symptoms would gradually get worse so winter time was the worst because what would happen is my hands would go blue and then my fingers would swell and I just didn’t understand why. And then I’d say to my husband and just on the record my husband is a doctor

Debbie: Handy.

Haffy: So I’d say to him my hands are really swollen what’s going on he’s like just wear gloves it’s probably because poor circulation wear gloves keep yourself warm etc. I didn’t think anything around rheumatoid arthritis at this point, even being from a clinical background that I am, didn’t think anything of it. And I think it’s probably because I’m thinking rheumatoid arthritis in young people, it’s unheard of. I mean, in my role, I do review patients with inflammatory arthritis, but they’re usually in a demographic, which is more around between 40 and 60.

Katy: Okay, so that made you think that it’s unlikely to be that sort of thing.

Haffy: Yeah, absolutely. So, I just kept pushing it back and then, my ring stopped fitting, which was like a big telltale sound my wedding ring didn’t fit. I had to go to the jewellers, get that adjusted And then once winter finished and we got into spring, symptoms started to get better again, and I only assume that that’s because of the weather and stuff and things like that. The other thing was we were trying for a baby. So, at this particular stage things were stressful as it was because we’re trying, I wasn’t falling pregnant and I had all this in the back of my head. I think with the added stress and everything else it was just getting a bit much even for my mental health as well.

Katy: Yep.

Haffy: But I didn’t do the one thing that probably would have helped is go and see a doctor. So even family members, I come from a South Asian ethnic minority. My mum, funnily enough, was also diagnosed with rheumatoid arthritis after my nan passed away. So, my mum was diagnosed and I think my mum subconsciously knew something wasn’t right. But I think she was in denial because my daughter’s young and I refuse to believe there’s something wrong. So, she’d just tell me, you you’re acting like an old woman, just suck it up, get on with it, have painkillers, deal with it. And it was just like, mum genuinely, I’ve been feeling like hell for the last nine to 12 months, something’s not right at this point I then went to see my GP.

Katy: You’ve been having symptoms for over a year when you went to the GP.

Haffy: Yeah, at this point I went to GP. GP wasn’t convinced that there was anything seriously wrong with me, but I said look, just for my own sanity, let’s do some blood but I said that my mum had just been diagnosed with rheumatoid arthritis and I would like you to include some inflammatory markers as part of the blood work. He goes, no, I don’t see any point in doing it because you’re not showing any telltale signs that I would think there was anything wrong with you in that respect. But I think because of my insistence, he was like, fine, I’ll do it. So did the blood all the bloods came back he told me everything is fine. The only thing that’s not fine is your vitamin D. So, I was like, are you sure everything is okay And, this is the trust that we have in our doctors, in our clinicians. As a clinician, I know the kind of trust that my patients put in me. So, I took his word for it.

Katy: Yep.

Haffy: So I’ll just work on that vitamin D. But in 2019, my symptoms just became unbearable. So, I go through phases where I couldn’t walk. They referred me to a physio, you know, to see what was going on. And I said, I can’t walk. I’m in so much pain because of my feet. was having time off work.

Katy: gosh.

Haffy: Work were a bit concerned because they didn’t quite understand what was going on. I don’t have any formal diagnosis of anything or anything like that. mentally it was really tough because again, in the background, we were also trying for a baby. And then it kind of all came to a head in March, it got to a point where I was just, something is not right. I went back to the doctor again and I said, listen, I’ve had 18 months of this. Something is not right. Have we missed something. The last time you came to me, we tried you on the vitamin D, clearly you’re still showing symptoms. So he goes, fine, let’s just repeat all the bloods again and let’s see what comes back. And I remember at this time, we were getting ready to go on holiday as well. And then while I was on the holiday, I realized, I’ve missed my period. So then obviously it did a pregnancy test and learned that I was pregnant on holiday. So, we were absolutely overjoyed. But then as soon as we came home, my world was turned upside down because we’ve done your blood and your RF factor is through the roof. I need to get you to be seen by rheumatology. And I said, you’re going to have to expedite that because I’m pregnant. We decided to take the private route and thankfully we were seen by a really, really good consultant who does private work but also works within the NHS. He was absolutely lovely and he goes, I can’t believe you’ve had to book a private consultation with me. I’m going to get you transferred into my clinic on the NHS as soon as possible. I mean, it was absolutely lovely. And what we had done is we’d requested the previous bloods I had. What was really interesting and what I learned in this appointment is the bloods that I had done previous to the ones I had done for diagnosis, the my rf factor was raised. So, when I had it done at the beginning of 2019 my rf factor was raised enough for the doctor to have sent me to rheumatology basically even before i fell pregnant

Katy: So why didn’t they do it? Did you ever find out?

Haffy: We don’t know, but I can tell you now we were shocked. There was a lot of emotions in that appointment because by then, unfortunately, within those last few months, because my disease it was just rampaging by this point, it had already caused the damage. So the type of rheumatoid arthritis I was diagnosed with is rheumatoid arthritis with undifferentiated mixed connective tissue disease. So, it’s a collection of syndromes basically. And the damage by then had already been done. So, I had a husky voice which started by the end of 2018. And what they said to me is the reason you’ve got a husky voice is, I developed nodes in my larynx. Yeah, yeah, yeah.

Debbie: Right.

Katy: Okay. Because sometimes you forget that there’s all these other consequences, not just joint consequences.

Haffy: Yeah, yeah, absolutely.

Debbie: Can I ask though, when your original blood tests were done, did you see as a patient, obviously you have all these expertise as well, but as a patient, did you actually see your blood results or were you just told?

Haffy: No,

Debbie: Because then obviously you as a pharmacist would have and your husband as a doctor could have picked that up.

Haffy: Absolutely Debbie. No Debbie. And I think it was a really big learning curve for me, my husband and even my family members. In the sense that double check everything. We place so much trust in the people who look after us and I have no disrespect towards that doctor or anything.

Debbie: No, things get missed. You know, they’re human in the end. It is what it is.

Haffy: I have to try and do what’s right for me now at that time.

Debbie: Yeah

Katy: And you can’t let the past affect you, can you?

Haffy: Absolutely and that was it. So, once I had the diagnosis it was like what do we do now?

Debbie: Yeah, especially being pregnant as well, because obviously that limits you on the treatments that you can go on Katy’s spoken about this as well. But what happened?

Haffy: They obviously did the very specific rheumatoid tests. And that’s when they confirmed that it’s not just rheumatoid arthritis. It’s a form of undifferentiated mixed connective tissue disease.

Debbie: Yeah. Yeah, this rolls off the tongue, doesn’t it?

Haffy: Yeah, so I know. then and then the rheumatologist at that stage was like, right, mum. We’ve got to get the disease under control. it’s really active. It’s not good for the baby but at this point I stopped thinking like a clinician and I started thinking like a mum and I just couldn’t do it because to me it was like yes, I need to take medication but what about the harm to my baby and you know, they keep saying to

Katy: Such a different perspective to just being diagnosed when it’s just yourself, but carrying your first baby then, yeah.

Haffy: Absolutely. Yeah, absolutely. And I was first time I said very early stages. And I think because of all the trauma we’d already been through with trying, I was not going to jeopardize anything with my pregnancy. So, I said, No, I don’t want to start.

Katy: No, of course not.

Haffy: I’m not comfortable. I know you say it’s got a good safety profile in pregnancy. I’ve seen the data, but I’m still not going to take it. And the consultant was like, right, you do know that if you don’t take it, your disease is very active. And because it was active before pregnancy, yes, a lot of the time it gets better for women in pregnancy, but your case is different because you’ve ever been treated. So, we do need to try and just calm things down. So she goes, it’s fine. We can think about it later on. Why don’t we keep trying injections? So I had an injection which would give me cover for three months and that was just to calm things down. I know it was quite agreeable to that because it had a much better safety profile, but my husband’s like, you’ve got to be able to function. You can’t be ill through your pregnancy. He goes, please consider the injection. So, I said, fine. So, I had the injection, but my pregnancy was really difficult. Now, in my head, when I think back retrospectively, to me, I feel like it is because of the rheumatoid. A lot of clinicians will say, no, it’s just your pregnancy. But I truly believe it was because of my rheumatoid. So, first trimester, lots of morning sickness. But as soon as the first trimester went, I was doing fab, I was then beginning to start to manage the pregnancy a lot better. It was until I think the four-month, five month mark, things started going downhill again. because I wasn’t taking any medication. I started to feel my symptoms again. I couldn’t walk I had to be on crutches. it got to a point where I wasn’t able to drive. then by, by five months, the doctor put me on bed rest. He’s like, you can’t go to work. So work were it’s fine. You know, your health comes first. So I had a lot more work from home days, did a lot of telephone clinics, I mean, I can’t fault work. The support I had was phenomenal. They were aware of my diagnosis, my situation with my pregnancy. And I think they understood being obviously clinicians and, you know, being a GP practice, they probably were acutely aware of some of the stuff I was going through.

I think from a rheumatoid point of view, things didn’t get better for me after I had a still in a lot of pain. And the doctors didn’t just understand what was going on, like why was my disease so active? And then obviously we had to make a decision about, we need to get the this under control. We tried various different things. I was open to go back on injections. We tried the injections again.

Debbie: Right.

Haffy: We then worked our way from a low DMARD. I had that for several, months really. It did help, but maybe not as I wanted it to. It had a lot of side effects was really, really difficult to tolerate. By this stage, I was going back to the consultant, and I said, look I’m really, really struggling with this medication and I need to try something else. She’s like we don’t usually do this but for you I know everything you’ve been through so we will try something else. It’s a bit off the record but we’d rather try it and see how you get on with it. And so the other medication they suggested works really well for people with rheumatoid arthritis with elements of mixed connective tissue disease as well. And

Katy: So, it’s more specific, is that biologic?

Haffy: So, it’s also known as a DMARD but a lot stronger than the previous one I was on. And I think it changed my life. as soon as I started it and then becoming stable on it, I mean, my symptom control was just phenomenal, absolutely phenomenal. The first time in three years, I could walk I don’t have swelling in my hands. I’m able to get up the stairs. I can do a whole day of work and not get tired. And I can look after my baby.

Katy: Well, yeah, that’s thing, isn’t it? That’s the priority.

Haffy: I’ve absolutely. I’ve really struggled the first year with my daughter. I really struggle.

Haffy: I really wish, as you mentioned, Katy and Debbie, I did look at those blood results because if I had, I really do wonder if my pregnancy would have gone differently and the experiences.

Debbie: Yeah. It does take time. And I don’t think people realise that having a diagnosis whilst then, get pregnant and live your life as well.

Haffy: Yeah, during the pregnancy, there was a lot of just toughen up, you can just deal with it. We dealt with it when we were pregnant. And in my head, I’m like, you have no idea what I’m going through. You have no idea what rheumatoid arthritis is. And when it’s flaring and when it’s this bad, I don’t think anyone can function, you know, and I had a lot of it.

Katy: Yeah. Yeah.

Haffy: I’m not going to lie, I had a lot of comments,

Katy: You should be able to say, I feel terrible and people should just accept it and then try and offer you the support. Yeah, I you is the first point.

Haffy: Yeah, absolutely. Absolutely. Yeah, and

Debbie: And believe you. Yeah.

Haffy: I have to say my mum is obviously from an older generation. I mean, she’s lived in the UK for very long time and she’s my absolute rock. But it was really difficult to talk about it with her because it’s not something you talk about openly. I know it’s weird. Obviously, our understanding of it has gotten better and we do talk a lot more openly about it. But for me, I think my mum is so worried about me, her daughter. And she just didn’t want to hear all these things because then it just worries her to death. And so, I got scared of telling my mom, I’m feeling like this, this is what’s happening. And then my mom would get really scared and she’s like, go to the doctor, go to the GP, have this, stop doing this, stop working. And, you know, it’s like panic mode, we’re a lot better. She knows I know what I’m doing. I still get comments like, do you have to be doing all these things that you do?

Debbie: Coming back to that and obviously, moving on a little bit. You do a lot. And how do you pace yourself look after yourself? Because now you have two children as well.

Haffy: Yeah, absolutely. And thankfully, my second pregnancy went really well, got to 37 weeks. And, you know,

Debbie: Did you have to come off with your medication during your pregnancy?

Haffy: No, so I made a decision to be on a very, very low dose of my medication because I think I saw the consequences of not being on my medication. And even though my rheumatoid arthritis actually improved through pregnancy, I made a decision to keep on a very, very low dose and I’d have it every alternate day just to have that cover. Because in again, you’ve got all you know, I still get that. But what if I start getting symptoms again? And then what if what happened to me happen again.

Debbie: Yeah. And I suppose you also, you had a young child to look after as well. So it’s not just you and the baby this time. had, you know, you had your first child to look after.

Haffy: Absolutely. Yeah. Yeah. And we were, we were also going through a lot of stuff with my eldest. So, she was going through a diagnosis of autism at the time. We were just navigating all that. So it was, it was pretty, it was pretty stressful, but I’ve really made time to enjoy my second pregnancy. I had time to myself and that was, that was amazing. And I had her, it was a plan section. But I mean, she’s amazing. She’s absolutely healthy.

Debbie: So how do you look after yourself now though, with two children and all this work that you do?

Haffy: Yeah, I mean, I’m really lucky. So, I have very good family support system. And I think that really, helps. I’ve got my mum and dad. Absolutely. And I think with an SEN child as well, you need a village, you know, because they’re not wholly independent. So they rely on you for a lot. And that’s what’s happened for me as a carer.

Katy: You’ve got your village. Yeah.

Haffy: And sometimes you need that time, but grandparents always step in and they’ve always stepped up to give us that time so we can have that time for ourselves. I mean, if I didn’t have the support from grandparents as well, I don’t think I’d be able to work. But I mean, they’re amazing. My daughter has made my eldest has made so many amazing strides. She goes to the madrasah, which is an Islamic faith school after school and then I’ve got my youngest in nursery and then University where I work and my current place of work again are so supportive about my needs and but also my daughter’s needs. I’m in such a good place at the moment in terms of my medication and things are really, really well controlled. We did have a bit of a dip because the medication I was taking, the brand got discontinued. So, then I had to go on another form, which is a generic form of the drug. Although I was taking it, I was having a lot of side effects with feeling nausea, tummy issues, that kind of stuff. So again, we’ve had to find another means of me having this medication. And thankfully, my consultant who’s absolutely amazing said, we’ll give you the liquid. I know it’s a bit more expensive, but you’re so well controlled on it. I feel like a completely new woman again. It’s like, I’m doing everything. I know, I know, but I’m so grateful for where I am right now.

Debbie: Fantastic.

Katy: It’s a constant up and down, isn’t it? And I think without having the harder times, it makes it difficult to appreciate when things are so good.

Haffy: Yeah, absolutely. And I feel like I’m at this stage with my rheumatoid arthritis where things are good at the moment and I hope they stay like that. I think they’re still that unknown with this condition. And it does have its peaks and troughs. But at the moment, I just live each day as it comes and just try and do what I can and try and make the most of it for my children. Yeah, yeah, no, absolutely.

Katy: Yeah, exactly what Debbie says a lot. Yeah. Yeah. Yeah.

Haffy: Yeah, and it’s taken me a long time to get to this stage. Mentally, I’m also in a better place as well. I’m just grateful and just take it each day as it comes just like you, Deb. So, so yeah, yeah.

Debbie: Yeah, well that’s fantastic. I think that’s a fantastic way to end. And I think what you’ve said there, Hafi, is what other people should be doing as well. Living with inflammatory arthritis, you’re always going to have the uncontrollable and there’s always going to be the ups and downs. But it is making that most of the good days. You have to have the bad days in order, as Katy said, to appreciate those good days as well. But Haffy, thank you so much for sharing your story. It is so inspiring and it’s so good to hear how well you’re doing now as well. but even with all your medical expertise, how you had to advocate for yourself though, that’s hard. I just feel for people that don’t have that expertise and they do have all that trust in the doctors to say, well, if it’s nothing, it’s nothing, must all be in my head. And I think we had that with James as well saying all his misdiagnosis.

Haffy: Absolutely.

Katy: Yeah.

Debbie: If there’s something wrong and you feel it in yourself that it’s not right, keep going back. You know, you’re not going to be this annoying person if you feel that something’s wrong.

Katy: Well, you’re an expert in yourself. The doctors might be experts in the medical side, but you are the expert when it comes to your own self and how you feel.

Haffy: Absolutely Katy,

Debbie: Exactly, you know exactly what’s going on. yeah, but Haffy, thank you so much again. Please do rate and follow the podcast from wherever you get your podcast from. Don’t forget we are also on YouTube, and I think this is a great episode to go sit and watch and have a cuppa and just enjoy it. And don’t forget to sign up to our newsletter. We are at inflammatoryarthritis.org. But thank you again, Haffy for all your time today. And until next time, Katy, it’s goodbye.

Katy: Goodbye.

Haffy: Thanks a lot, it’s been an absolute pleasure, thank you so much, thank you.

In this powerful and deeply personal episode of Inflammatory! Debbie and Katy are joined by Haffy, a clinical pharmacist, university lecturer, and mum of two, who shares her journey of being diagnosed with rheumatoid arthritis and undifferentiated mixed connective tissue disease in her late 20s.

Despite her medical background, Haffy’s diagnosis was delayed, highlighting the challenges of being a young woman with inflammatory arthritis and the importance of self-advocacy. She opens up about pregnancy, motherhood, cultural expectations, navigating work, and finally finding the right treatment that transformed her quality of life.

This is an honest, emotional, and inspiring conversation about resilience, trust in your body, and making the most of the good days.

Key Topics Discussed

• Early symptoms of inflammatory arthritis and delayed diagnosis
• Living with rheumatoid arthritis in your 20’s
• Being dismissed due to age and “normal” blood results
• The emotional impact of misdiagnosis and missed test results
• Pregnancy, fertility, and treatment decisions with inflammatory arthritis
• Balancing motherhood, chronic illness, and a demanding career
• Cultural attitudes toward illness and “just getting on with it”
• The importance of support systems and finding your “village”
• DMARDs, treatment side effects, and finally finding the right medication
• Learning to pace yourself and protect your mental health
• Advocating for yourself within the healthcare system

Memorable Takeaways

• You are the expert in your own body.
• Trust your instincts, if something feels wrong, keep pushing for answers.
• Chronic illness doesn’t stop at joints; it affects your whole life.
• Pregnancy decisions with inflammatory arthritis are deeply personal.
• The right treatment can be truly life-changing.
• Good support, family, work, and healthcare makes all the difference.

Why This Episode Matters

Haffy’s story is a reminder that even healthcare professionals can struggle to be heard as patients. Her experience shines a light on delayed diagnosis, the need for compassionate care, and the realities of living with inflammatory arthritis while raising a family and maintaining a career.

It’s also a hopeful episode, proof that with the right support and treatment, life can feel full and joyful again.

Resources & Links

• 🌐 Visit: inflammatoryarthritis.org
• 📩 Sign up for the Inflammatory Arthritis UK newsletter
• 🎥 Watch the episode on YouTube
• ⭐ Rate & follow the podcast wherever you listen

Thank You

A huge thank you to Haffy for sharing her story so openly and honestly. Your voice will resonate with so many people living with inflammatory arthritis.

Until next time make the most of the good days 💙

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/