The Versus Arthritis Podcast

Episode 2 – Pushing Open Doors – Yvonne’s Arthritis Diagnosis Story

May 20, 2021 Versus Arthritis Season 1 Episode 2
The Versus Arthritis Podcast
Episode 2 – Pushing Open Doors – Yvonne’s Arthritis Diagnosis Story
Chapters
The Versus Arthritis Podcast
Episode 2 – Pushing Open Doors – Yvonne’s Arthritis Diagnosis Story
May 20, 2021 Season 1 Episode 2
Versus Arthritis

Yvonne was first diagnosed with arthritis at age 11. Now 64 years old and diagnosed with widespread osteoarthritis, Raynauds and Sjogren’s syndromes and fibromyalgia she has learnt  a lot of about living life with arthritis. Yvonne shares her diagnosis story as well as her tips on speaking to doctors, relationships at home and more!
 
If you have questions about your condition, you can visit versusarthritis.org for more information. 

Show Notes Transcript

Yvonne was first diagnosed with arthritis at age 11. Now 64 years old and diagnosed with widespread osteoarthritis, Raynauds and Sjogren’s syndromes and fibromyalgia she has learnt  a lot of about living life with arthritis. Yvonne shares her diagnosis story as well as her tips on speaking to doctors, relationships at home and more!
 
If you have questions about your condition, you can visit versusarthritis.org for more information. 

[Alex]: Hi, welcome to the podcast. My name's Alex and I'm here with Yvonne. Hi, Yvonne.

 

[Yvonne]: Hello there. How are you doing?

 

[Alex]: All good, thank you. Thanks for coming on. So, before we get started, why don't you tell our listeners a little bit about yourself?

 

[Yvonne]: Okay. So, I'm Yvonne and I live in North Wales. I've got a number of conditions. I started out being a teacher. I was always going to be a teacher from as far back as I can remember and I really loved it. And, sadly for me, the arthritis put paid to my teaching career. But, just to show, I'm feeling really good now. I've got lovely grandchildren that I really enjoy spending time with, and I've got a job that I can fit in around me, and life is looking good.

 

[Alex]: That is a lovely sunny, sunny start on this sunny end of April day. I might just want to mention for our listeners that some of normal life has returned in London where I'm recording this. So, if you hear random acts of moped, I apologise. But let's all try and pay attention to Yvonne sharing her story. So Yvonne, I mentioned in the little intro that you live with multiple conditions, when were you first diagnosed with a long-term condition?

 

[Yvonne]: Well, my first diagnosis was when I was about 11 and I have Raynaud's syndrome. I think it started off as a syndrome, and then it became a disease, and I believe now it's a phenomenon. But anyway, I had problems from being little - being cold, fingers went white, toes weren't happy. And my mum, as mums did I think in that time, wrapped me up. I had a Liberty bodice, a thick coat and gloves, and when I was 11 mum actually took me to see a specialist and that's when I got my diagnosis of Raynaud's syndrome. He then offered a resolution, but frightened the life out of me. He said I could have an operation called a sympathectomy. And when they do that, they cut some nerves in the neck, which stop the fingers knowing that it's cold. So blood would always carry on flowing. Yeah, that wasn't good, I didn't like that idea and my mum didn't like that idea, and anyway it wouldn't have helped for my feet anyway. So, yeah, so my first experience of being diagnosed was a pretty scary one - wasn't much fun at all.

 

[Alex]: Yeah, that does sound incredibly... 'sympathectomy'? It's perhaps a bit of an inauthentic name. So you were really young when you first had these, you know, these quite intense symptoms. I mean, obviously there's only so much you'll remember given the medical advice etc, but how did you feel and was that just normal to you? Or did you, you know, did you feel anything, you know, around that condition?

 

[Yvonne]: I started off feeling normal-ish, but then everybody else at school didn't wear the same furry lined coat that I did. And I had big thick gloves to wear, and boots. Oh, there were these boots called dairy boots that were plastic, really, on the outside, but they were all furry on the inside. And they were nice and warm, but they were not a fashion statement. And when I went to my secondary school - I went to the girl's grammar school - that was not a fun time when they realised that, you know, I was very different from everybody else. The specialist had told me that I ought to just read a book because I did say that I loved horses, and I wanted to go horse riding and things like that. And he said "I don't think so, just read a book". But actually it didn't stop me. I did go out and about, and I did do lots and lots of things that I loved doing, eventually. But it took till I was about 14 or 15 when it really stopped bothering me - what other people felt - and then I could get on with life and do what I wanted.

 

[Alex]: Wow, yeah that's, you know, a lot to go through at that age. Do you think that... did that come from your treatment and your... perhaps your symptoms easing? Or was there a certain rebellious streak that coupled with that?

 

[Yvonne]: Oh, definitely the rebellious streak there. No, the symptoms didn't ease. In fact, they got worse. With Raynaud's, it starts off and it's just your fingers, or your fingers and your toes. But then I used to find that my ears... the tips of my ears and my nose... it wasn't nice. But there wasn't really anything that you could do for it. I mean, I could have started taking painkillers a lot younger, I guess, but at the time I managed to get on with it and get going. And oddly, when they go white, you know, they're sort of dead. And so they're not so painful then. It's when they're coming back, when the blood's getting back into them, which is when everybody else thinks "Oh, she's okay now", but that's when it's really not okay. But nonetheless, yeah, bloody-minded would be good. I did all the things I wanted to do.

 

[Alex]: Yeah, well that is important. I think you've raised quite an interesting point off the bat, which is the degree to which that... whether it's your physical symptoms or perhaps the mental process of being not like some of the other kids or it can be, you know, it can be adults for a later diagnosis... that there is a degree to which other people not understanding is always an important part of the diagnosis story. And I think what has been discussed a lot on these podcasts is that it's not just a medical... 'diagnosis' sounds very... you know is very medical as a term, but that whole period of other people not understanding what you're going through is not just a physical thing, there's all the mental aspects with it, which is why I felt it was important to speak to somebody who was able to reflect on their diagnosis, as we've already spoken to Tom - who was diagnosed very recently. So thanks so much for giving your perspective. So, slight segue there. You sort of mentioned that things did brighten up for you at least with your approach, was there a particular turning point when you felt empowered with the right knowledge and support, or has that been a gradual process over the years?

 

[Yvonne]: I think that came only much later, after I'd been diagnosed with osteoarthritis and Sjogren's... fibromyalgia... that became then that I was a better person. I think if I hadn't had the Raynaud's and then managed with it, I may not have felt I could manage quite as much as I ended up having to do, ultimately. But it taught me (having Raynaud's) that if there was something I dearly wanted to do, I should get on and do it. I also managed to make a few really good friends, and we all used to go out together and that made a huge difference. They didn't mind, they would help and do whatever needed doing when I was out with them. And it just wasn't difficult somehow.

 

[Alex]: And so you've mentioned that you were diagnosed first with Raynaud's, but then you have had multiple diagnoses since. Talk about, you know, if you could talk about that process of realising 'there is more that needs looking at' and perhaps the mental process of going through another diagnosis or, in your case, a few.

 

[Yvonne]: Yeah, it was a bit weird actually, because from being about 13...15... my knees and my hips started to creak a lot, you know, when I went upstairs, or stood up, or got up from the floor. And that always seemed a bit odd, but we just laughed about it and then carried on. It didn't actually hurt at all, but I did sometimes wonder then whether things weren't quite as right as they should be. But it wasn't until quite a lot later... so my knees started to give way a bit after I was an adult, after I'd had children, and I had a couple of bad falls and I thought this isn't really what should be happening. There wasn't a reason, you know, I just seemed to fall, but I wasn't really clumsy. And it wasn't until I was about 45, eventually. I had another fall in the shower and I decided that I couldn't go into teach that day because, you know, it just hurt everywhere where I'd fallen over. So, I thought I'd go and see the doctor because I had had a niggling issue with my wrist. And, you know when you go and open those big push doors and you use your hands? So, sort of like, the palm of your hand is against the door? And so your wrist is bent, you know, your hand's sort of bent up? Well, my wrists just wouldn't do that anymore. And these doors ended up getting shoulder barged as I was going around to school, you know, trying to get where I was going. And I thought I'd just go and see this doctor and see what he would do for me... if there was anything. I thought it was going to be repetitive strain injury or something because I do like computers and that kind of thing. Anyway, he sent me for a blood test, and that was in 2002, and then I was diagnosed straight away with rheumatoid arthritis.

 

[Alex]: I think that's really quite interesting for our listeners, and certainly for myself, what you said about that door. Because when you mentioned the door we can all picture that big metal panel. And perhaps that's one of the... for many people who don't experience these symptoms... that perhaps represents the easiest possible way to get through a door. And it seems like such a good example of how those everyday things can be taken for granted. And when it's not right it's really not right. So, I want to ask you - now that we've talked about your initial diagnosis - about support and once you've been diagnosed, or during a period of diagnosis, how important that support is. So, you've obviously... you work for our Versus Arthritis online community, which I mentioned at the beginning, and you previously volunteered in an environment which provides support, so how important is that kind of support, from particularly other people with similar experiences, when going through a diagnosis or a kind of post-diagnosis?

 

[Yvonne]: Well, actually, pretty much major because... I had the blood tests... I was diagnosed with RA and then I paid to go and see a consultant - because, being a teacher, you know, you don't like being away from your classroom and your children - and because I... I don't know... while I was waiting it just seemed that every other joint decided it now had permission to join in. And I had very widespread joint pain and limited mobility and it was just awful. And I was in a complete panic and my life just seemed to be totally out of control. I didn't know whether I was coming or going, I didn't know what to do. I didn't know how to help. I just knew nothing. And all I had was the diagnosis of RA and medication. I had hydroxy painkillers and a steroid injection.

 

[Yvonne]: And ultimately throughout those things, whilst I was still trying to get my head round this, I saw a gentleman at a pain clinic. Now he was absolutely fantastic. It was a turning point. He was a brilliant consultant. He listened to me. It sounded like he believed me when I told him what the pain was like. He talked to me, he gave me advice. He sorted out my medication a bit better than it was. And he told me to go to an EPP course, which is Expert Patient. So, this was 2002 and they were brand new pretty much. And that course changed my life. It was absolutely brilliant.

 

[Alex]: What is an EPP course? So as an expert patient are you put in touch with other expert patients, I suppose? And how does that go?

 

[Yvonne]: I know it sounds a bit weird, doesn't it? And I have a feeling that it didn't help the future doctors and other medical people that you seek because, you know, an expert patient is going to be their version of hell, isn't it? But in fact, what it was, was a group of people, all like me - they'd had a diagnosis or they were waiting for a diagnosis. They had problems. They had loads of different conditions, could be diabetes, could be a heart problem, it could be MS, whatever. And they were talked to by two people who had conditions themselves, they were volunteers. So they were volunteers who'd gone through a course, gone through training, and then set out to deliver this course for other people to help them in the same way that they'd been helped. And so, what it taught me, was that regardless of what your condition is, there are absolutely loads of people out there who have all had exactly the same problems that I've got.

 

[Yvonne]: And so, the thing is, you get your head round that. You think 'somebody has solved every problem that I am going to face' so I don't always have to do the solving. If I can work out the right questions to ask, or the right things to type into the computer, or the right way to go and talk to my consultant or my GP, then I am back in control aren't I? So, instead of being 'panic situation', all of a sudden I thought 'I've got my light at the end of the tunnel now, I can see how this works'. I mean they had pain, they had fatigue, they talked about mental health, physical problems. A six week course it was, for a morning, rather like the Living Well courses that I know Versus Arthritis delivered when they were Arthritis Care. I don't know whether they're still going now, but really helpful, lots of information to give you, lots of sites that you can go and look at that they know are good sites, you know, they're not going to try and get your money off you too quickly. But that was just a real eye-opener for me and gave me back my control, which is what I had lost.

 

[Alex]: Well, I hope that the fact that you're able to share a few of your experiences on this podcast will mean that somebody else will hear your story and think that you might have the answer to something that they've been asking. So, I just wanted to ask you... it goes without saying that with several diagnoses, and also having a condition when you were younger, you've spent a lot of time with medical professionals, and what we hear a lot from everybody we speak to, more or less, but especially younger people, is that building that relationship with clinicians and medical professionals... and there's part of it - you mentioned very eloquently how lucky you were to find somebody who believed you, which I think is a really brilliant way of putting it - have you, I suppose... how important is that relationship with clinicians and medical professionals when it comes to diagnosis and managing your condition? And, also, would you have any tips on, kind of, building that or learning your way around these interactions?

 

[Yvonne]: Well, yes. I did have to go through quite a lot actually because, as it turned out, I don't have RA. So, what I have is the widespread osteoarthritis, which is a bit more unusual. It gets away from what they used to call the 'wear and tear' bit.  That excuse didn't work with me because why would I have it in my shoulders and my elbows? I just can't imagine what I did to do any wear or tear there. And then the fibromyalgia and the Sjogren's... the Sjogren's I think I probably had all the time as well, it just wasn't diagnosed until a lot later on. And the reason that I got my changed diagnosis was because I found a GP I could talk to. And so to do that, do you know it's not really easy? What I did was... I think a lot of GPs now, they have surgeries, but there's lots of GPs there... and so what I did, I went to see the first one. When you go and join a surgery you're given, so to speak, a GP. So I started off with that one and I thought 'do you know, this guy just does not understand what I'm saying'. So I went to another one, next time I rang up I said, "Oh, could I see (so-and-so)?" and they said "fine". So I went and saw them and I thought 'yeah'. But there's some doctors, you know, I'd be happy to go to them, any doctor at all, for an acute issue where I'm going to get given a tablet and told to go away and it'll work or whatever, but not for chronic. So I tried again and again, and eventually I happened upon a doctor who was exactly on my wavelength. She sat down with me and took the time to go through what I was doing, what I was taking, where I'd been, what I thought my pain was doing.

 

[Yvonne]: And she just said "right, well, look, you know what you're doing and what your condition is, you know what options I've got, you need to let me know how I can help you", which was brilliant. And that works really well. And now I still have that same GP, I'm very lucky, and she will give me a phone appointment and we can manage like that. And it makes life a lot easier. One of the things I learned with talking to consultants is that they are really busy people. And before you go in, they know what they're going to say to you. And the other thing I know is that when you go in to see your consultant you know you haven't got long, and you know you should be strong, but actually the only thing you want them to do is to let you leave, do you know? It's really weird but that's how it is. So, I used to make my list of the questions that I needed to ask, the things I needed somebody to check out for me and find out. And then I would give the list to the consultant as soon as I walk in. And I said "these are the things that are worrying me". And I would do the same with the GP if there was more than a couple of things that I needed to remember, because remembering things is a bit of an issue. And being put on the spot is a bit of an issue. And taking a friend with me was always essential because otherwise I wouldn't remember what it was that I'd been told. So with luck, the consultant looked through and he thought 'oh, well these two are easy', so he'd tick off those and tell me what was happening with my medication, or where I was going, or why something wasn't working.

 

[Yvonne]: And then he'd carry on along his own lines of where he thought that our conversation would be going. And then I did something that I've come to call 'persistent patience'. So, I'm listening to him, and I'm trying to pay attention to him, and to remember all the good things that he's saying. And then when he's looking like he's drawing a breath, I then just said "yes, but what about...", "I really need to know this...", or "I'm really unsure, can you just explain that to me again?" And I just refused to look like I was about to get up and go until I'd got the answer to the important questions that I needed to know, because really it's your only chance, isn't it? And, most of us, we only see our consultant twice a year, and we can't afford to waste that twice a year. And if you have got an issue, that's the way to go. And lastly, use the secretary or the nurse, whichever you've got. But they've been really, really helpful. I've rung up the secretary and said, you know, "I'm down for this operation" and they've gone and checked it all out with the consultant, and then rung me back and said what's happening, and then written to me with it as well. So, all of those things I think are really important and so helpful in making you feel like you're in control of your condition, because if you're not in control nothing's going to get done.

 

[Alex]: Thank you, Yvonne. Thank you for all those in-depth tips. I think we'll hear a few more tips from Yvonne after this short break.

 

[Advert]: Would you like to meet other people with arthritis? The Versus Arthritis online community is a brilliant place to share your experiences or benefit from the support and shared insight of other people with arthritis. Make sure to check it out on community.versusarthritis.org, that's community.versusarthritis.org.

 

[Alex]: And we're back. So finally, Yvonne, this is the final segment. We do one in every episode. And it's all just about asking our guests to reflect on their diagnosis and give us any, sort of, tips they've gained along the way. But I'll frame it like this - what advice would you give to your younger self, or someone newly diagnosed, around getting diagnosis and moving forward afterwards?

 

[Yvonne]: Cor! Yes, if I'd had an older self that... because I didn't have anybody that had any of these conditions or know anybody that had them, so I think possibly I would advise my younger self to see if there wasn't somebody around that had the condition, sort of like in my situation. So, there's loads of places to go to get help. I said I work on the online community, that has been brilliant. I mean you can tell from the teacher in me that... I started off delivering the expert patient courses and I progressed from there. And now I actually have an employed job which is great because all I'm doing is helping other people with arthritis like me. And if they don't have my arthritis they've got my symptoms and we can all help each other. So I think, find someone that you can get to know that has got arthritis, similar condition, or similar treatment, to what you've got and to use places like Versus Arthritis to help you to find those people because that is really, really helpful.

 

[Yvonne]: You've got somebody there on the end of a text that you can just get hold of and say "this is one of the worst days I've had - can't get out of bed". And, all of a sudden, they'd be telling you "well that's all right, stay in bed", you know, "watch something on the tele", "do something calm and patient". Another thing I would say to my younger self is "don't get so impatient because things will happen in their own good time". And if you'd planned to go out... I don't know, to wherever... today and then today arises and you know it's not going to be a good idea. You just know that you're going to struggle and you're not going to enjoy wherever it is you're going, then don't do what I did and still go anyway. And don't say that you're hurt and, you know, and suffer because nobody wants that for you. Nobody would say, well, you know "my day has been ruined because you didn't go out". But you've ruined your own day for you, and possibly ruined their day too - thinking that they've made you feel like that. So, talk to people, be honest, tell them how you feel. Come up with some sort of situation. I mean my husband is my main carer and we had some real trouble to begin with, trying to work out how he could help, because initially I felt that help meant taking things away from me. So I was losing control again - I suppose there's a bit of a common theme there, that I don't like losing control. So, in the end, we divvied up the jobs that I really couldn't do, like the vacuuming. And so my husband does the vacuuming, and if he hasn't done it by Thursday, I'm allowed to say, once, you know, that the vacuuming hasn't been done this week.

 

[Alex]: Ha!

 

[Yvonne]: And that's fine, he promises that he will then make sure that he does the vacuuming. And if there are jobs that normally I would do, maybe preparing the tea - you know, peeling vegetables, that kind of thing - he's allowed to offer once to take the job from me, if he can see that I'm struggling and I'm being a bit of an idiot for carrying on doing it. And if I say no, then that's my decision. And he has to allow me that decision, even if he knows full well that it's going to lead to issues later on. But that was what we needed to be able to get along well. And now, well, we get on so well that we're actually doing this job share together. So, we're managing brilliantly and we get on really well now, better than we have for... well we've always got on well... but you know, even better than it could've possibly been.

 

[Alex]: Well that's some exceptionally sage advice for young Yvonne there, and thanks for sharing all of those experiences. I think those real-life examples are exactly the reason why it's just good to, kind of, have a chat and pick this stuff. And it's been brilliant speaking to you and thanks so much for coming on the podcast. Thanks very much. I do hope it helps somebody.