208. Tilly Rose

0:06Well behaved women rarely make history. Bloody difficult women do.

0:15This conversation was both harrowing and uplifting. I spoke to a 33 year old who has spent almost two thirds of her life as a mystery patient in the NHS, that has finally got the care, the diagnosis and the answers that she and her mother sought. But my goodness, what a long road it was. Welcome to Difficult Women.

0:58When this week's difficult woman, Tilly Rose, was 30, she's now about 33, I think, just turned 33, she was told by a hospital consultant there was nothing more he could do for her. All he could offer her was comfort care, essentially palliative care. Tilly says, Tilly Rose says, he was essentially leaving me to die. She's been a medical mystery and in and out of British hospitals for two decades. working her way grimly through almost every department you can imagine respiratory gastroenterology urology endocrinology cardiology neurology but this is this is going to be an exciting bit to to go into given how unpopular social media is and what a bad rep it has out of desperation tilly posted on instagram summarizing her medical history hoping someone might be able to help her which finally helped her to get a diagnosis and all that that transpired from it turned into her new book Be Patient which we will get to Tilly and congratulations I've got the paper back on my lap I cannot wait to read it.

2:05Thank you very much. Welcome to Difficult Women. I think we should really start because it is part of your story with your childhood that started off happy and healthy didn't it? Yes it did. I had a really lovely happy healthy childhood a very stable loving upbringing and yeah fundamentally I wasn't a patient for the first 10 years of my life. I lived a normal happy life. I think that your career as a patient has been dated to the consumption of a bowl of cereal which you had as a child on your aunt's farm, grandparents farm tell us the story yeah um so yes age 10 i became unwell for the first time with a burst appendix which is something that you know people get appendicitis thought that i'd get over that and continue my life again but the same year i got pneumonia for the first time and then for the next 13 years i was in and out of hospital with repeated pneumonias and age 16 underwent an emergency bowel resection.

3:13But nobody knew what the cause of all of this was and I was deemed a medical mystery. Eventually, to cut a very long story short, I was diagnosed with what was 13 years of undiagnosed active tuberculosis that they traced back to drinking unpasteurised milk on my great aunt's dairy farm when I was five years old. And it had led to all of these symptoms. I was eventually treated for that, which was incredible. I finally knew what was wrong with me and there was a treatment I could take. And for a brief period, got my life back. But sadly, the tuberculosis, I'd had it for a long time undiagnosed.

3:53And the subsequent problems that it ended up causing in my body led me eventually to be also diagnosed with Addison's disease, which is a life-threatening disease where your body doesn't produce cortisol. again they said take your steroid medication and you'll be able to live a relatively normal life and I thought great I've you know got this diagnosis that's not nice but I'll be able to manage it and sadly the story continued and a few years later more symptoms came and I became the medical mystery again and that's been my that's been my journey I've been a medical mystery every step of the way and as a result I really do believe I've seen every corner of our healthcare system because I've been sent as you've listed to every department going every ologist I say and be patient like a hot potato I was passed from one to the next nobody taking ownership and yeah I really have seen it all and I say become the expert patient which is the expert that nobody ever wants to be.

4:51Of course not nobody wants to be the patient. The Times has called your book an antidote to this is going to hurt the other side of Britain's hospital wards and I'm sure you will be telling us some of your experiences, which I hope may be turned into some medical drama. Yep, that would be good. BBC commissioners. Yeah, anyone listening. Be patient is out there. Yeah, Adam Kay's was a BBC drama. Exactly. The option is available. I like that. Going back to that moment of eating the bowl of cereal. Yeah. I mean, that's a pretty brilliant piece of detective work on the part of, was it your family, you, your doctors?

5:29How did you actually identify the culprit? Well, initially, well, to start with, my parents and my family hadn't considered tuberculosis because as far as we were aware, it was eradicated in the UK. My year group at school was the first year group where they stopped the vaccine. So they stopped the vaccine. Wait a minute. Was that the thing with the BCG we used to have? Yeah, where you'd get the mark. Yeah, you'd get a kind of little wigs buddy thing. I don't have that because they stopped it. So why did they stop it? Because it had been eradicated. This was the thought process. But sadly, as I've seen in medicine now so many times, these preventative measures, if we don't end up taking them, things go wrong.

6:10And we have a measles outbreak at the moment. Come back, don't they? You then got tuberculosis because they thought the disease had been eradicated like polio had been or measles. Turned out that it hadn't been. It was present and there was a vector in this unpasteurized milk. Yeah. I mean did you know your great aunt was giving you unpasteurized milk? Well when you went on these childhood holidays to Ireland you were just presented with a jug of milk on the breakfast table that I do remember was warm and thick and cream and a bit different to the milk we had at home but no one thought anything of it, it was just placed on the table and that's what they'd done for years and years and years and it was only later when I got the positive result for the tuberculosis and we were trying to work out where I could have contracted it.

7:01And what was significant with my TB story was that it was in my intestines, which is often people have it in their lungs and they're infectious, whereas mine was in my intestine. And that is often more common from unpasteurized milk. And it was my grandma who ended up saying, identifying that any milk I would have drunk back then in Ireland would have been unpasteurized. And that was how they traced it back. Yeah. Yeah, crazy story. And tuberculosis and then Addison's disease, but you've got a whole suite of other kind of ologies and itises, haven't you? Do you want to just run us through the main ones?

7:43Yeah, so it was a story that sounds very complex and extreme, and it has been extreme, but in a way everything was connected. So fundamentally I had the tuberculosis. tuberculosis often causes addison's disease and it was then subsequently when i again began to deteriorate with this list of symptoms affecting every symptom in my body um that was in 2022 so tell tell our listeners how it felt to have these symptoms what kind of symptoms were you experiencing so at that point i was experiencing um muscle convulsions which were like these seizure-like attacks that at one point were happening every two hours i couldn't physically move from the bed my whole body would be shaking all my muscles were visibly contracting I had swellings all over my head my scalp my abdomen was growing so I had this skinny body with this pregnant looking tummy what was that what was that well eventually which was the London hospital admission I was deteriorating at home I eventually was in a London hospital for almost three months living on the open ward of AMU, which was a very traumatic experience.

8:52What's AMU? So AMU is an extension of A &E. And normally patients go to AMU as a bit of a holding bay while the doctors decide. Acute medical unit? Yes, yeah, acute medical unit. Well, sorry, the doctors decide what ologist or what department they need to be in, which ward specializes in their care. But nobody could identify which doctor or discipline I needed to be under. So I spent almost three months living in a blue box with my hospital curtain in a bay with three other people. It was with a window blind that didn't open. Bedpans surrounding my bed night and day. People climbing into my bed during the night.

9:31Sorry. People dying next to me. It was horrific. Why were people climbing into your bed? Sadly, you get patients who have got dementia. And yeah, it's just incredibly sad. Were you on a mixed unit? A female ward. Female ward. But yeah, it was a truly horrific, traumatic experience. At that point, I was 29. So that's quite recent. That was recent, yeah. And that was the admission where, as you read at the beginning of this, I was told that at the end of it, there was nothing they could do. They were going to discharge me on comfort care. And my mum and myself in particular and my family, we couldn't accept that you could discharge someone on comfort care without a diagnosis because they still didn't know what was wrong with me so our mindset was there is a reason why this is happening and we're going to find it hence the post the desperate post on instagram to see if anyone in the world had any ideas and quite incredibly after i guess an admission in many ways that had really tainted my view of human beings in some capacity it restored my faith in human beings because strangers who had didn't know me from all around the world took time out of their day to get in touch with test suggestions diagnosis ideas treatment options and my mum compiled all of these into a master list and she'd been I mean she is she'd been my medical detective throughout my whole life.

11:04She's never stopped pursuing answers. And this was no different. And she made this master list of all the ideas. All the options it could be. Everything that people had suggested. And she worked her way through every single one, thoroughly researching them. And there was one that she kept coming back to. Which was? That was vascular compressions. And vascular compressions are where the blood vessels in your body become squashed and your blood can't flow to vital organs. and with kind of piecing together her detective work she realized there was a direct correlation between vascular compressions and losing a significant amount of weight that meant that veins and organs could end up shifting into the wrong places and with the tuberculosis I'd lost a really significant amount of weight in a very short space of time and to try and sort of yeah give you an overview it then turned out that I'd got underlying Ehlers-Danlos syndrome which I'd been born with which is where you're you're basically hypermobile you're too bendy but what we didn't know was that by being bendy on the outside you can also be bendy on the inside and this had led the vascular compressions to develop because my connective tissue was too stretchy and it was this perfect storm i then had the tuberculosis which meant i lost the weight so things moved and it was a domino effect where it seems like this totally mad story and it is in many ways but every single part of it was connected and it was only when I got that final vascular compression diagnosis that all the pieces of the puzzle the jigsaw came together

12:52who was the sleuth who suggested vascular compression on your instagram i couldn't tell you the exact person there were a couple there were a few people who suggested uh it was a condition called MALS that they suggested. And my mum kept looking up MALS and thinking, Tilly, it doesn't quite fit. But then the more she read, she realised you could have different vascular compressions in different places in your body. And it set her on a path. And through doing that, there was a professor in Germany whose name kept appearing in her research papers. And it turned out that he had this very specialist scan that people were flying from all around the world to have.

13:30And in November 23, I went and had that scan. And I had that moment where I finally had a diagnosis and a path forward. Did you meet him, the professor? I did. I met him. Do you want to name him? He was called Professor Skolbak. He's in Leipzig. And it's been incredible, actually, on this journey to see how many other particularly young women, because this is a condition, Ehlers-Danlos, which particularly affects women. Is it because we are more mobile than men? I don't know if they've totally figured out the reason yet, but our connective tissue in some way makes us more predisposed. No treatment available on the NHS here or was there?

14:05Well, by this stage, which was incredibly sad, I'd, as you know, I'd been discharged and I was told there were no more tests that they could do for me. Case closed. And I needed to accept this as my life. And it was basically a case of just managing symptoms. Well, when you're having seizure-like attacks every two hours, that's not manageable. That's not a life. how can you be sent back to your family in that state so there weren't any options for me here and my mum has always said that her phrases are giving up is never an option there is a reason for everything and her final one was always one person is all it takes and I often say that one person is her but it was also then these German medical teams that I found who bought into me as a person and not just a patient and I had a totally different experience of seeing another side to medicine whilst I was out there.

14:59I think you're Kate, you're such a good case study and why the NHS should never ever say to somebody you're a mystery patient we cannot tell you what's wrong with you because that can never be the case. There are always more tests, that's what mums, there are always more tests. Oh you see I'm like your mum, I wouldn't have given up. No we We weren't willing to accept that. And that would be my message to anybody listening who's got a chronic illness or an undiagnosed illness. My story ultimately is a story of hope because we kept going and we kept believing that the answers were out there. And really, it just required somebody to really look.

15:38And I know, and as any good novelist will tell you, all of the best novels are quests. And this is a medical quest. That's a good word. I like that word. Use the quest. And also you did find what you were looking for. Yeah. So there's a sort of happy ending. We're going to go back to more of your life shortly. But you've mentioned the fact that in 2023 you had the vascular compression diagnosis. Yes. You had the treatment. You met the prof who basically saved your life and returned it to you. Yeah. How have you been since? Well, I ended up having the scan in Leipzig. I then went on to have my life-saving surgeries in Dusseldorf.

16:25So describe them. Well, horrific. If they're not too gory. They are pretty gory. So it's open abdominal surgery. You're cut from top to bottom. You've got great scars, I bet. A pretty big scar. Eight hours plus of surgery per operation. I had three in the end. Why did you need surgery? Because I had multiple vascular compressions in all different places in my body that was affecting blood flow to different organs. And it all needed to be done in one go and the veins needed to be opened up. So it was a horrific surgery. If you're observing somebody having it, but to actually go through it, it's one of the most serious, horrific operations I've seen.

17:09But the care that I had meant that every step of the way, I just really trusted the people around me. A-tower surgery? Yeah, that was the first one and then a second one of eight hours. And then I had a third one as well. So it was and I ended up being in Germany for almost 18 months. In the end, we thought we were going out there for three weeks. And my case became so complex. And these compressions had been undetected for so many years that we ended up having to stay because I was so seriously ill. but my German angels at the clinic Belletage and Dusseldorf saved my life again and again and they never gave up on not only saving my life but wanting to be able to give me a life that I could live when I got home and that mattered more than anything.

17:52I think you've got to say something about your mum and could you have done this without her? Absolutely not no if we're talking about difficult women today and using it as a huge compliment then every step of the way my mum has never accepted no in the sense that she always felt that she could see these physical symptoms were happening to me and she knew there had to be a reason for them and in my childhood through my teens when I was living at home I would regularly wake of a morning to find mum still on the floor by the computer surrounded by research papers she didn't just you know do a bit of research she devoted a night and day to this research and never gave up on one believing and to actively showing how much she loved me because that was showing it she was doing you know something night and day to solve this case and what I think is incredible is that she set out to save my life but now what this story and my platforms are doing it has gone on to change and save the lives of so many patients all around the world and how incredible is that that was something she would have never envisaged from you know 4am on her laptop 12 years ago so and you've got to tell everybody how this has branched out to really help others your your own case study and your own recovery yeah so because of sharing the story on instagram when i was in that london hospital admission this post about the diagnosis sort of went viral and i I then began to develop this large Instagram community, many of whom were patients and patients' families.

19:34And by sharing, I started sharing chapters on my Instagram. I wrote it as a narrative. And it was a narrative that was playing out in almost real time, where I say even the author didn't know the ending. So these people were coming on the journey with me, but also getting an insight into what the daily reality of life as a patient's really like. My Instagram is far from glamorous. It's a horror show. But it was showing the reality of life behind the hospital curtain. And in that sense, validating what all of these other patients were going through. And I really believe it's not something that's widely talked about still.

20:07I think patients are a group in society that I don't believe have truly been acknowledged yet in the sense that we have all of these media reports on the NHS. We often hear from doctors, we hear from nurses. And I completely agree. The conditions they're working in are terrible. But I always say they can go home at the end of the day. And as a patient, you are stuck in that environment 24-7. You can't escape. You have no choice over the situation that you're in, no agency. And what my platforms are trying to do is give a voice to the patient. And I'm now using Be Patient, my book, as part of my wider mission to try to impact patient care on a much broader scale.

20:49There's a victim's commissioner. It strikes me there should be a patient's commissioner and it should be you. Well, yeah, again, if anyone's listening. They did actually, a few years ago, there was a Patients Commissioner who came in and really does need to read, be patient. Yeah, they did. So there is a Patients Commissioner. I didn't even know that. Yeah, but... Have you met with them? I haven't, no. And as I make, I only return from Germany in the summer. So the kind of work that I'm doing is just getting started. But I would love to get in front of members of Parliament. I would love... What would you tell them?

21:23I would tell them that, firstly, everybody is talking about the patient in these conversations, but the patient needs to be in the conversation as part of the decision making policy making process. Because I say that when the politicians turn up on wards, it's a bit like school off stead. Everything is prepped for their arrival. And I sometimes say that I would like them to come on a sleepover with me in the blue box and see the reality of what goes on. They really should. I mean, they've done, ministers have done homeless sleep outs. They should do hospital sleep ins. Yeah. And I think that they would be quite shocked.

22:00So I would say... What would shock them, do you think? I think the main area that I believe would shock them would be the basic level of care in our hospitals that isn't always there. There is so much talk in the media about these large developments in terms of medical breakthroughs and science and advancements. It's all fantastic. I'm obviously totally for that. But how can we go and start focusing on those things when we have patients that have been given corridor care, having groin swabs taken in public corridors because there aren't enough beds. Patients lying like me surrounded by moats of bedpans because there aren't any cleaners on the wards.

22:42Cleaners coming into the wards who don't have cleaning products. They're just cleaning with water. my bed area in that London hospital wasn't cleaned for 30 days and I could write my name in the dust there are photos on Instagram of it nurses were hanging drips onto the stands with plastic gloves because there weren't enough stands to go around so my biggest thing would be that our basic level of care in our hospitals isn't being met and before we get that right I don't know how we can move forward with all these big advancements music music music

23:28what about medical misogyny which i know you've been an advocate against in platforms like mumsnet what did what was your experience of that so sadly throughout my whole journey that is something that i've repeatedly experienced and the main time i've experienced it has been when the medics have reached a point where they can't find the diagnosis so when they can't find a label as to what's physically wrong with you despite you having physical symptoms there is suddenly being a shift to it's all in your head or it's a woman's issue which we don't know which is a woman's thing that we haven't researched and there's not the science behind it or put into it very true as well and on one of the admissions I went from having doctors crying at my bedside saying they were going to help me they were going to do every test they could to 60 days in not having a label not having a diagnosis and suddenly the language your perceived inability to walk your perceived swelling you're perceived i you'd made it all up it was all psychosomatic it was psychosomatic and i turned around to this doctor and i said how can this be perceived when it's so overtly visible I'm saying that I'm in agony with my tummy.

24:39I looked nine months pregnant. I'm saying that my feet are burning. You can see a rash going all the way up my leg, covered in disgusting pustules. These symptoms, they were... I'm saying I'm having the seizures. We've got videos. You've seen them take place. These symptoms are visible and they are happening. And I believe in so many... They were basically saying that you had Munchausen's or something. Well, that's what they would have been applying to my mum. And sadly, they do to families. And it's, I mean, it's terrible. And it's something that I've seen in so many other women as well. So whilst in Germany, I met women and mums and daughters from all over the world who had flown over for this life-saving surgery.

25:24And there were girls who had been self-catheterizing 30 times a day and been accused of choosing not to urinate. and I've said before how can you choose not to urinate that's just not a thing you can't and it's it's happening it's the language do you think these attitudes are more prevalent towards female patients I can only talk from my experience and from the people I've met and the stories that have been shared with me but overwhelmingly the messages I receive are from women saying that they've had very similar experiences of as soon as a physical diagnosis can't be found there is a shift to it's all in your head and that is something as you say I'm now with Mumsnet looking to change and use my platforms to yeah be a voice on that topic as well because it badly badly needs to change I just it strikes me that your confidence and your determination combined with your your mother's determination and love together with the fact that you got yourself to Oxford despite battling these extraordinarily debilitating illnesses and unexplained conditions means that you were not really the mystery patient you were the nightmare patient yeah you're right yeah they hated me they must have thought what can we do to get rid of her so far too complicated saying that you were just you know we're going to just sign you off with palliative care you were the patient who refused to take i don't know for an answer yeah absolutely and had we not i would be dead there's no doubt about it i wouldn't be here sitting with you today if we'd have accepted the things that we were told along every step of the journey and it was each step the tb that was at one point that was stress the addison's disease they sent me to a psychologist two weeks before my first adrenal crisis if you go into adrenal crisis the next step is coma death and the third one was vascular compressions which was so serious that and so bad by the time they were diagnosed that blood was leaking into my spine and the professor who diagnosed me said that if it had been left much longer I would have ended up paralyzed or dead so if we hadn't fought and not an except and if we'd have accepted what we were told then and if my mum hadn't been the person that she was driving this then there is no doubt that I would not be here today.

27:51And I'm here today and I'm living. You are. And you look very, you do glow with health and energy. What was it like going to Jesus College, Oxford? You read English, I think. I did, yes. I mean, that's a tough subject to get in on. So you did incredibly well to get into Oxford. What was it like, you know, the day to day for three years? Oxford is a high energy, fast paced, intense environment. How did you manage? Well, it was my little 10-year-old dream. We stumbled across the sign one day when I was recovering from the pneumonia outside Balliol, inviting the public to have a look around. And I went into Balliol and turned around to mum and dad and said, I'm going here.

28:30And everyone kind of laughed. And then I became really seriously ill that same year. I will continue to be very seriously ill. And I was told not to take my GCSEs, not to bother applying to university. And throughout it all, I just held on to this goal. and it became my total dream and distraction outside of patient life. And as you say, I got in to read English. And my experience was obviously different to my peers. I had to manage my health alongside it. And that meant that my mom would be coming and filling my fridge with my medications. And I'd be heading off to hospital appointments. And I had a lot of time in hospital whilst I was there.

29:07The Radcliffe, where did you go? Yeah, I went to the Oxford Hospital. And were you always living in Hall because of your condition or could you move out? Jesus actually had accommodation for all of the years that I was there. So we were able to live in Jesus, Jesus accommodation. But for me, just being there was something that I've never really gotten over. Like it was an absolute dream come true. It was an experience I will never forget and I'll hold on to forever. And at the end of it, I had that degree and I had something to show for a time when it would have been so easy to have just given up.

29:38But I always say that with the condition I had, tuberculosis, which I didn't know at the time, if I kind of worked out that if I stayed very still and didn't exert too much energy I could control these infections better and reading became the one thing I could do from the bed and the sofa so studying really did become my thing my focus my escape because I could do that and your therapy yeah there was nothing there was nothing wrong with my brain it was my body that wasn't working and I could I could read I could I continued to do yet to do my course in the end because I did become so seriously ill whilst there and I had to start the tuberculosis treatment whilst I was at Jesus my degree ended up being extended to a four-year degree which meant I had the same amount of classes and tutorials as everyone else but it just made up for that time that I was in hospital and yeah another year in Oxford yeah which is very special now listen I mean I don't want to kill the buzz because that was a joy to hear but what was your most difficult time and when have you had to be or when have you had to be most difficult lastly tilly rose i think patient life particularly when it's ongoing and when you have something chronic or undiagnosed the real challenge is that you have to be difficult for a very long time and it's not just a one-off experience so we found ourselves that i'd say me and my mom as a team almost having to be difficult in the sense of knowing how to play the game with the doctors and knowing how to approach conversations so you didn't offend but you got what you wanted and we found that in that sense I guess the difficulty we posed to the medical profession was that knowledge is power and we realized that if we had the knowledge to back up the questions that we were asking it was much more difficult for them to dismiss us whereas if we just turned around and my mum said oh my daughter's very ill that was easy to dismiss if my mum said can we please look into cytochrome p450 and they thought oh that actually could be a possibility suddenly it was much more difficult to kind of shut the door on my case because what if that did end up being the thing that i had so i think it was an ongoing challenge but i would say the most difficult moment along it was probably it was after the three-month London hospital admission where they discharged me and said that there was nothing they could do and I arranged a follow-up with one of the consultants who was one of the lead doctors at the hospital because I still felt that there were tests out there that I could I could have and I was still fighting for my life and I went to the appointment with my mum and I sat in front of him and he leaned over and explained the situation and he leaned over his desk and he pointed in my face and he said you need to give up and accept this as your life and he said there are no more tests there isn't a diagnosis and we weren't willing to accept that I'm not surprised you have proved that doctor completely wrong and all all credit to you Tilly Rose what's next well my mission moving forward is to impact patient care and I believe the patient needs to be as I said before in these conversations so I am now working with medical organizations charities biotechs trying to give the patient perspective and my big aim is I want to get in front of Wes and be sharing this patient experience with him and showing the reality of patient life and being a voice for all the other patients have we sent a book to him the books are currently being sent out to a few few different um yeah mps and we should read yeah and wes at the moment yeah and i feel that that's really really important because they have the power to create change but i feel that they need the patient voice to drive that change everyone will agree with you and cheer you on thank you so much tilly rose for being this week's difficult woman thank you very much for having me

33:50I'll never forget those descriptions of Tilly Rose being told by a consultant to just go home and die what an incredible story thank you very much for listening to another episode of my difficult women podcast just remember to subscribe and download wherever you get your podcast to make sure the latest episode is always ready to go every Friday afternoon bye