Episode 5 – You’re not alone

EP5 You’re Not Alone

Mental health difficulties can go hand-in-hand with inflammatory arthritis. How bad can it really get? Inflammatory with Debbie Wilson and Katy Pieris, navigating life with inflammatory arthritis. Hello and welcome to the latest episode of Inflammatory with Debbie and Katy.

Debbie: We really enjoyed the Q&A session last week, so please do keep sending us your questions via our website, inflammatoryarthritis.org, especially the voice notes so you can be heard on our podcast. This week, we really want to talk about the mental health side of inflammatory arthritis. We’ve touched on this slightly in Episode 3 and in our Q&A session last week, but there is a lot more to pick apart.

Living with any physical disease is hard enough, let alone one that fluctuates. Lots to go through and I’m sure any of you listening who live with inflammatory arthritis will identify with this complex part of the illness. Katy, lovely to see you. How’s your week been?

Katy: Hi Debbie, great to see you as well. The week has been a lot better. I’m in a much better mood, I have to say, and a bit of exciting news in our house. My son lost his first tooth yesterday, so we had the visit from the amazing tooth fairy. I had to do a little quick dash to get some cash out, because nobody has cash anymore, do they? And work out what the going rate is for the first tooth.

Debbie: Oh, what is the going rate?

Katy: I checked, I did a little bit of research, I checked with a couple of the school mums and a lot of people, I think it’s a bit overboard and my husband didn’t agree, but £5.

Debbie: £5? Okay, good luck.

Katy: Won’t be giving that for every tooth, just to clarify. We’ll take that to about 50p to a pound.

Debbie: Well, yeah, I’m glad my kids are past that. Jeez, that’s a lot. He’s doing well. He might just pull them out now, just to get some money. Laughing…Apologies to any parents there, I think Katy has set the bar extremely high there. You’re unique, Katy, is the word I would use. But you say you’re feeling a lot better in the mood, what’s that due to?

Katy: Netball team at the weekend, we had a win, and we don’t really win that often. For the last three years, we’ve pretty much gone down in every league, which has been a huge sort of challenge to kind of keep the morale going. Also, sort of some of my niggles with my inflammatory arthritis have kind of disappeared.

So, I thought last week that I was potentially going to flare in my wrists, but that hasn’t happened. So, that always makes me feel better when my body is feeling much better and I can do everything that I want to do.

Debbie: Well, I’m glad you’re feeling a lot better, and you didn’t flare because I was slightly worried last week that you might in your wrist and everything because it can be really painful and then obviously playing netball, but I’m glad that didn’t happen. So, that’s great.

Katy: What about you? Yeah, the week’s gone really quick, but I must admit, I’m glad it’s the end of January. Looking back, we haven’t launched the charity for a month yet and I’ve just been quite overwhelmed with everyone’s comments and everything that is kind of, I think it’s really shown that we are needed and everything and it’s just been great.

Lots of hard work, but we’re really getting there. So, it’s just, yeah, that side’s been really good. Personal side, fine.

I did choke quite badly on pizza last week and it was really quite scary. My husband did actually have to whack my back. It was, yeah, a bit of melted cheese got stuck in my throat.

Not the best at all, but my kids were sitting there. We were sat around having dinner. They didn’t quite know what to do, but thankfully, my husband just whacked my back and yes, it kind of came out. So, sorry for eating at this time.

So, shall we crack on with, let’s talk about the mental health side. It can be tough to talk about, but Katy, I remember what you were saying when you were diagnosed, you were given a lot of information at the time, and I was given the opposite. I had nothing. So, my question to you is kind of how did that impact on you? Did you feel overwhelmed and how did you then start to process the emotional side of the diagnosis?

Katy: So, yes, I did feel really overwhelmed with the amount of information and all the different leaflets that I was given about the medications that they were discussing that I start on. Also, when I was diagnosed, there’s a huge search engine that you can look on for your own information and what I found was so many pictures that really made it hard to understand that that could be my future.

So, when I Googled rheumatoid arthritis, it came up with a really old, deformed hand and I think it still happens now if you search and search images. And yes, people do end up with deformities and disabilities as a result, but now that the medications are much better and treatment’s much better, a lot of people won’t find themselves in that position. But when you’re first diagnosed and you know absolutely nothing about the disease and you go onto the web and you search and you find forums, you find Facebook groups, it really makes you highly concerned.

I can remember reading some stats about the number of people that are out of work within five years. I think these stats would have changed now, but it was really disconcerting. I thought I was going to be unable to walk, I was going to look different, and I wasn’t going to be able to work and have my own income.

So, it was, I just felt totally sort of concerned, confused, upset that that was my potential future. And nobody was really there to kind of support me or talk me through how I could make that better.

Debbie: And the crux of this is how did it impact on your mental health, Katy? How bad has it been for you and how good is it now?

Katy: Right now, I think I’m in a really good place.

However, I think what it did give me is really, really rubbish moments of, I think I was so worried about what my future would look like. And that was probably in the first sort of three years, but I didn’t really face, I didn’t kind of really face my mental health or try and, I tried to ignore it. So, I tried to, I mean, I literally ran away from it by trying to run loads and challenge myself and doing things.

So, I think I ignored it for a lot of years. And it was when my son was about nine months, and I was really struggling. I didn’t think I could be a mum. I didn’t think I could do anything. And it was because I wasn’t on the medications. I’d had to stop them.

I really struggled with the whole being on maternity leave. But a lot of it was down to that sort of daily pain that I was going through. And I couldn’t, I just couldn’t see how I was going to get out of struggling every single day again. Because I kind of went back to square one and it probably arose, I don’t know what the word is, those sort of feelings that I’d not dealt with when I was first diagnosed. So, I kind of went through that process twice.

Debbie: Yeah. How did you get out of that? Did you see anyone? Did you get a counselling at all?

Katy: I didn’t, and I really wish I had. So, I did start therapy last year. So, it took, so my son would have been five, six. So, I ignored it again for many years and just sort of parked that part of my brain.

Debbie: Yeah. I can completely relate to you there. I must admit when I, it wasn’t until that I went to university, I’d masked everything up until then. Completely ignored that side of it, being told just to deal with it. So, I kind of did. But when I broke down at university outside my head of faculty’s office, this is in my blog again, it’s all on our website. That moment there really did change my life. I was struggling so badly. I was flaring, being away from home. I couldn’t see a future at all. I couldn’t see how I was going to continue studying.

But then what would I then do? I couldn’t then go get a job because I was in so much pain, and I was just in tears so much. And I spoke to this lady, and she really did change my life. And she had had counselling, and she didn’t kind of say, oh, you need to have it. But it was kind of like, have a think about it. If you think this would help, try it. And that was the first time I had counselling and it really, really did help.

It is tough if you go through it. People think that actually you just sit there, and you talk about yourself, how hard can that be? But it’s really emotionally triggering and actually realizing that I hadn’t dealt with my diagnosis at all. I had completely ignored it. But I felt then having the emotional strength, I think it teaches you emotional strength and actually that you can deal with this. Look at all the times that you’ve been through bad flares, etc. You have got yourself through that.

And I really don’t think as us as people living with this, we really give ourselves enough credit because it can be really, really tough. And you had therapy last year. I had therapy again last year because my scleritis was flaring.

I was going through a really tough time. My job was being made redundant. I think anyone being made redundant knows it’s tough unless that’s kind of what you want.

But it was doing a job that I really enjoyed. I was in the rheumatology world really trying to make a difference to people living with inflammatory arthritis. And I woke up again, so much pain in my eye. And I forgot that I’ve got scleritis as you kind of do. You kind of try to live in the moment when you’re feeling good. And it was just so painful. I had meetings that day. So, I carried on doing those meetings stupidly. And I ended up in a London eye hospital again.

And obviously they did the tests. And I think any test, if anyone knows this, it is like torture. If they were going to ask me a question, I would give them any answer. It is just so, so painful. And then I needed that therapy again, because I don’t think I dealt with my scleritis diagnosis either. And being so scared of losing my eyesight and then not being able to see my children grow up.

And then having my daughter diagnosed and thinking, is history going to completely repeat itself? Is she going to end up like me? And I did have a really, really horrid thoughts. One time I went and sat in my local park and there was a bench. And I just remember sitting there, watching the world go by.

Children playing football and cricket, just laughing, enjoying life. And that bench, I didn’t realise I sat on, was a memorial bench to one of my daughter’s friends. She had died a few years earlier of cancer. And I just sat there looking at that bench and looking at her name, realizing she wanted to live life. She had this horrible thing, but she wanted to live it. And actually, I’m here, I can live this, but it’s that mental side of it, trying to make yourself stronger and knowing you can.

And it is really, really tough to go through. But I got through it and I’m here to tell the tale sort of thing. But it’s just, if anyone out there is going through this, we’ve been there. It has been really dark. This is what the diagnosis and what inflammatory arthritis can do to you, that again, not many people understand. They see you masking it all the time. Katy, do you find that you mask it as well, even now?

Katy: Absolutely. And I think what I definitely did when I was early on, and I probably still do, is I’m kind of a bit of a chameleon and I’ll pretend in, I’m going to call my normal world that I don’t have anything wrong with me. But then when I’m in the inflammatory arthritis world, I’ll maybe, I mean, I am now, but I’ll maybe not talk about kind of my running, my tennis, because I’ll feel like I don’t fit in.

Because there can be so many people that are in a worse situation than you are, that you don’t feel comfortable sort of saying a lot of the stuff that you can do. But I think hearing that people can still do things is what can actually be the most helpful to people that are currently in a bit of a dark space.

Debbie: And I guess we do need to talk about what people can think of as a taboo subject, suicidal thoughts. I know I’ve had some in the past, living in such pain for such a long time and having, for me as a youngster, no help at all. Katy, have you ever had any kind of thoughts like that at all?

Katy: I have, and I’m just super thankful I never kind of actioned those thoughts in any way. And it’s that feeling worthless because you don’t feel like you can contribute anything, whether that’s to your family, whether that’s to your workplace.

And I know we’ve touched on it before, but that kind of real knock in your confidence of what you can do. But it’s not just that, it’s what your future looks like. And often your future can look really, really bleak.

So, it’s just an awful disease. And I think to get out of those sort of thoughts, it’s about thinking about trying to think positively, which I think we’re both really good at doing. And thinking about your kids and the things you can do.

Debbie: Yeah, I must admit, when I’ve had them, even in recent years, I’ve had them. I’ve had to think about my kids, my dog, my husband. He might not like that I’ve put the dog before him, but it’s just kind of thinking what we’re here for really.

And it is tough when you are in that really dark space and trying to be positive is the hardest thing you can ever be. I think you are living in pain. You’ve got this sort of dark cloud over you. How can you get yourself out of that? I just took a day at a time and sometimes not even that. It was half a day at a time. I got my kids up. We went to school. And then some people would think I was probably the laziest mum. I would just come home. I wouldn’t even have the telly on. And I would just sit. And I would walk my dog.

And there were times when I remember the moors near here where I live. Being there, throwing her the ball, one of those plastic things because I couldn’t throw it well myself. And just seeing her come back, her fluffy ears thinking this is the best day ever.

And I was standing there in tears just thinking I’m in so much pain, but it’s great that you’re having the best life, but I really wasn’t. But that way that she just picked me up a little bit as well. As much as she drives me crazy, in that respect, she has been so good for me and for my daughter as well.

For you, Katy, how did you get yourself out of it? Because once you do feel so dark, those thoughts really can seem to take over your life.

Katy: They can completely. And I think I’m a bit strange. So, when I’m having thoughts like that, I’ll try and ignore them by being like super outgoing, the life of the party, that kind of thing. And I’ll just try and put it to the back of my mind. And I don’t know what the word is, but I don’t kind of sit in my thoughts.

I try and ignore them. I do lots of other things, but then they’re still there in the back of your head kind of niggling at the back, kind of eating away at your sort of how you want to be. So, it’s really, really tough. And it’s something that you kind of know is potentially always there, especially if you go through a period of having lots of flares, having lots of pain and just struggling with the simple day to day things. And it is, as you said, it’s trying to find those little happy moments and kind of focusing on the small things, not the big things to try and bring yourself out of that. And I think we’re both testament to the fact that you can really deal, excuse me, I’ve got a frog on my throat, that you can really pull yourself out of that and look to make a positive change.

And for me, that positive change has been found through doing things like that, this, trying to connect with people that are similar to me, going through the same thing and knowing that there is light at the end of the tunnel.

Debbie: Oh, completely. It is just, I think the theme with us is that we try to ignore it, but then I think we’ve realized that we can’t and it is actually how you try to process it.

And I think you need to acknowledge it. I think trying to ignore it doesn’t happen because it does always eat at you, whether it’s the pain, it’s the physical side or it’s the mental side, either can just eat away at you. And it’s actually, there is support out there for anyone kind of feeling like this. But I suppose the other thing as well is kind of the mental health side is anxiety. And I never realized that I suffer with anxiety.

We’ve mentioned that my husband does my medication for me with the injections. A couple of weeks ago, he was out. So, I had to do it. And it was the first time in years that I could feel it coming over me. And I was thinking, I’ve got to now inject myself. And my stomach was pushing away from me, and I was trying to, weird things were going on, but it was just like, right, okay. I had to bring myself just back down to earth, take it away for a bit and go, okay, I have to do this. I’m in pain. I need my medication. So, I just have to do it. But it was just talking to myself. That’s how I got myself out of it. But with you, how do you find that?

Katy: So anxiety, I never really thought I suffered with anxiety, um, but in lockdown, I actually did a mental health first aid, of course, and because I actually, I didn’t, I’ve always maybe been a bit ignorant to mental health because I think I grew up in a household where you just got on with things, typical kind of child of the eighties, growing up in the nineties, mental health, that’s a load of rubbish kind of chat.

So, and it’s taken me a long time to actually really acknowledge that we all have mental health and we’re all on that sort of, um, there’s a spectrum of whether you’re in good mental health or poor mental health, just like your physical health. And then I realised I’ve probably suffered with anxiety for years post diagnosis with being anxious about being in appointments, what’s going to happen in the appointment, what are they going to kind of tell me? Um, recently I got diagnosed with osteoarthritis in my wrist, which has always been something that I’ve been terrified of, to be honest, because that’s something where actually there isn’t medication that can help. It’s just constantly going to deteriorate.

And it’s strange when sometimes the worst thing happens that’s in your head, it’s actually fine because my wrists are in quite a good space at the moment. And I’m very frustrated that I haven’t been given the x-rays that I maybe should have over the last nine years. However, sometimes the worst thing isn’t the worst thing.

So it’s trying to think about that when you are being anxious, that it’s never as bad as you think it might be. I suppose, you know, just listening to you there, I kind of think, you know, and the disease and how it fluctuates and everything, I think that will accentuate anxiety because you do feel like even if you plan something next week, you feel anxiety about, am I going to flare? Can I do it? Sort of thing. So, I suppose it’s that nature of it as well is really reflected in our mental health side of it.

It’s probably, I’ve never really thought of it before, but I think it is for me. And just listening to you as well, I think it is reflecting the mental health side and the physical side. And I think whenever anyone thinks of a physical diagnosis, you really have to think of the mental health side of it as well, because it really can impact us quite a lot.

And I just think that’s where we need the support and that’s where, you know, because not only that, it will help us then deal with our life better as well. So why wouldn’t you have those two things mirroring each other all the time?

Katy: But it’s all about building resilience and it’s building resilience physically and mentally. And that’s where I think there’s a huge gap in the sort of services that are around at the moment.

Debbie: But again, this is, you know, why we’re doing this because I think it shows that we’ve been in those dark places. We’ve got ourselves out of it without probably the support that we probably should have had. And so, we can do this. And I think your brain can be really good and it can be really bad, but you’ve just got to realise that you can really get yourself through this as well. We have popped some support in our show notes. So please don’t think you’re alone on this as well. You’re really not. You can get yourself through this. The main takeaway is don’t feel alone.

All of us living with inflammatory arthritis need to be really vigilant about the impact of the illness on our mental health. And don’t be afraid to talk about it at all. I think Katy, you mentioned previously no one ever did, but it is okay to talk about. So please, you know, get in touch with us as well.

Next week is a bit of a gear change. We’re going to be talking about sex and relationships with inflammatory arthritis to coincide with Valentine’s Day.

So, Katy, I hope your husband, hint, is going to get you something nice next week. Thank you so much for listening. We will be with you next week and take care and goodbye.

Goodbye.

Katy: Goodbye

In this episode, Debbie and Katy open up about the often-overlooked mental health challenges of living with inflammatory arthritis.

Firstly, Katy shares that she is in a better mood, helped by her netball team’s rare win and the pain in her wrist didn’t turn into an IA flare. Along with the excitement of her son losing his first tooth and the going rate of Tooth Fairies.

They go on to share their personal experiences with anxiety, depression, and the emotional toll of chronic illness. From the overwhelming fear of their futures made worse by internet searches after diagnosis to the daily struggles of managing pain. They discuss coping strategies, especially in the dark moments including suicidal thoughts, and emphasise small daily victories.

They also explore the importance of acknowledging mental health alongside physical health, and the role of support systems including loved ones and pets, and strength through connection with others facing similar struggles in finding hope.

The conversation highlights the need for better mental health resources, reassuring listeners that they are not alone and it is ok to talk about mental health and to seek help.

Key Topics Covered:

• How inflammatory arthritis affects mental health
• Anxiety, depression, and the fear of the unknown after diagnosis
• Personal experiences with dark moments and the struggle to stay positive
• Coping mechanisms, small victories, and the power of connection
• The need for better mental health support for chronic illness patients

Resources & Support:

If you’re struggling with your mental health, you’re not alone. Please do seek help and support. We’ve included resources in here for support and further guidance:

Samaritans https://www.samaritans.org/ 116 123 always open

Mind https://www.mind.org.uk/ 0300 102 1234 Open 9am to 6pm weekdays

Shout  https://giveusashout.org/  Text Shout to 85258 open 24/7

Campaign against living miserably https://www.thecalmzone.net/ 0800 58 58 58 open 5pm to midnight

If you’re in Wales

C.A.L.L. https://www.callhelpline.org.uk/ 0800132 737 Always open

Next Episode Teaser:

Next week, we’re shifting gears to talk about sex and relationships with inflammatory arthritis—just in time for Valentine’s Day!

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🎧 Listen now and remember: You’re not alone in this journey.

Disclaimer: 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/

A Boutique Broadcast production for Inflammatory Arthritis UK