Recognize Me

Imagine facing a medical system that dismisses your symptoms and undermines your experiences. Our guest and dedicated advocate for patient empowerment, Anneke, reveals how she tackled this daunting challenge. Her remarkable journey from misdiagnoses such as chronic fatigue syndrome to finally understanding her rare chronic conditions, including adrenal insufficiency, lupus, and Ehlers-Danlos syndrome, exemplifies resilience. Anneke’s story is not just about surviving but thriving, and it serves as a beacon of hope for anyone navigating the complexities of the healthcare system. Her book, "Recognize Me," offers a compelling insight into the life of someone living with fluctuating chronic conditions.

We explore the nuanced challenges of medical gaslighting and the crucial role of empathetic healthcare providers who genuinely strive to listen and truly understand their patients. Anneke’s experiences underscore the importance of self-advocacy and the transformative power of receiving a proper diagnosis and treatment. Her occupational therapy and health research background adds a unique perspective to her advocacy efforts, highlighting the intersection of personal experience and professional insight. The episode sheds light on the struggles many face with being misjudged by healthcare professionals and the ongoing effort to balance health challenges with familial responsibilities.

The conversation delves into the human side of healthcare, stressing the significance of effective communication and trust between patients and doctors. We tackle the stigma of being labeled as "drug seekers" and the fears associated with transitioning to new healthcare providers. Anneke shares her encounters with medical practitioners who value collaboration and admit to uncertainties. Her insights remind us that patients should never feel ashamed of their symptoms, and despite chronic illness, a fulfilling life is within reach. This episode is a powerful testament to the resilience of the human spirit and the importance of defining personal happiness amidst health challenges.

• Welcome page to my website:  https://flyingthroughthewoods.weebly.com/
• Blog: https://flyingthroughthewoods.weebly.com/flyingthroughthewoods
• Podcasts:https://flyingthroughthewoods.weebly.com/podcasts.html
• YouTube:https://www.youtube.com/channel/UCqcKATXhDJF_X05TGW0g3xw
• Recognise ME:https://www.amazon.com/Recognise-ME-documenting-journey-gaslighting/dp/1739259270?_encoding=UTF8&qid=&sr=
  

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. 

Chapters

• 0:00 Empowering Patients
• 13:18 Navigating Medical Gaslighting Experiences
• 26:57 Navigating Patient-Doctor Interactions
• 37:42 Building Patient-Doctor Trust and Communication

Transcript

Jen: 0:08

Welcome to my Spoonie Sisters. Today I am thrilled to have an inspiring guest with us. Born in Belgium, she's a passionate advocate for patient empowerment and medical reform. After being diagnosed for not one but two decades, she courageously overcame the devastating effects of medical gaslighting and now uses her journey to give patients the tools to advocate for themselves. With a background in occupational therapy and health research, she's not only an accomplished professional, but also a memoirist, a speaker and a blogger. Her book Recognize Me sheds light on the complexities of navigating rare and fluctuating chronic conditions. Please join me in welcoming Annika. Look at that beautiful book.

Anneke: 0:56

Yeah, I'll show you again.

Jen: 0:59

Oh, I love it. I wish people in the podcast realm could see how beautiful that is. That is a good look. A lot of work went into it. Did you design it yourself?

Anneke: 1:07

No, I had a really, really excellent publisher who I don't think she does do cover design as well, but I think she got somebody else involved because it kept going back and forth. She sent, she sent them straight back to the designer a few times and then sent some to me to say I don't like this. Do you you know? So it kept going back and forth until all three of us went like yes, that's it absolutely.

Jen: 1:32

I love that. Okay, so, listeners, when you go, look at the show notes. We will have a link to her website and I'm positive you will see a beautiful picture of her book on top of that. Welcome, lenia. We now have, as I've recently announced to everyone, for january we have co-hosts, so lenia's joining us today. It's so good to have both of you here it is.

Jen: 1:55

It feels like a really warm group to have this podcast with it really does, especially during this time of year when it's so cold out. Now, do either of you have snow where you're at?

Anneke: 2:05

not at the moment, but we do sometimes no, it won't last, if we do get any we had some a couple of weeks ago, but that was kind of a bit early for the season. It's usually kind of now and we enter the typical snow at Christmas kind of country.

Jen: 2:19

Over here. It's my rainy season. If we do get snow, it doesn't last very long. We might get some ice, but it's really just rain and I'm okay with that. Can you share a little bit about your journey from being misdiagnosed I'm sorry with chronic fatigue syndrome to finally receiving accurate diagnosis of adrenal insufficiency, lupus and Ehlers-Danlos?

Anneke: 2:41

Yeah, that's right, that's how it happened. I got diagnosed with I think it was ME is what it was called first and then I lived through the whole discussion of if we call it ME, then these people think they're really ill. We better call it chronic fatigue syndrome and back again. So I went through all that, but I think initially it was. In fact, the specialist said we don't yet know enough about this condition to give a firm diagnosis, but everything I find fits with myalgic encephalomyelitis. That's how it happened.

Anneke: 3:16

It was literally weeks before my 21st birthday, but I'd had signs and symptoms of all sorts of things that didn't connect together, but tiredness, exhaustion, had really become my main symptom, the thing at the top. I did my studies and, as I studied to be an occupational therapist, worked full-time for a very short time before it turned into four-fifths and, yeah, just dragged myself from sick leave to sick leave. And meanwhile, whilst I also met really what I call good doctors but that's not really entirely fair, you know how do you measure that but the ones that are like we can't cure but we can care attitude, but unfortunately I met a heck of a lot of professionals who would ridicule me, who would diminish my diagnosis, my symptoms, who would look down on me? And one actually literally burst out laughing and said you don't believe all that, do you?

Anneke: 4:17

When I actually presented with the results from investigations that had been done.

Jen: 4:22

Yeah, Excuse me, that is unprofessional to say something like that to a patient.

Anneke: 4:27

I've actually got some excerpts from the book, but we'll be on for a long time if I start doing that. I got more and more ill and I stopped having it looked at. It was like you can't do anything about it. Anyway, I'll just make the best of it.

Anneke: 4:41

Met my husband had returned back to Belgium after I'd gone on incapacity and a few years later met my husband, who was still together Nearly. We're going. In February it'll be 19 years, so the 20 is getting closer. Congratulations, thank you, and I think the congratulations are for him really for putting up with all this. I mean the first thing.

Anneke: 5:05

My book opens with this quote from him saying I don't believe in Emmy. I was like, oh, here we go. But he was willing to listen and he heard how different my story was to what he'd been spoon fed through the media and he's always been there for me. He's been to most of my appointments. It's taken days. Most of his holiday leave is spent on medical care or social care for me and for our son. We've got an 18-year-old who has a whole list of diagnoses longer than mine and somehow we managed it.

Anneke: 5:37

Yeah, it was a tough do. When our boy was a toddler I'd been bedbound for years. I came out for really important family things or things that you know spoonies are listening, they'll know what I mean and for doctor's appointments, and that was about it. But then in the news, well, actually I'd gotten onto the internet and kind of become part of a community there and reconnected with old friends and stuff through Facebook. We're talking about 15 years or so ago now. I read there that it was in the news, so I went and looked it up in the news that two doctors were getting fined huge amounts for investigating and treating patients who had ME-CFS and, through their investigations, finding other things and treating that and it cost too much. So they were fined and I heard that. I heard it said that one of them was told by the powers that be you really shouldn't investigate further with these patients because you'll always find something. Well, isn't that how it's meant to go? You know that you find something and you deal with it yeah, isn't that the point?

Jen: 6:42

the point is to help the patient feel better, to feel the best they can. How can we help them?

Anneke: 6:47

yeah, exactly. Um. So my husband and I talked about this and should I, should I go to one of them? Should I, is this something I should try, or am I going to be disappointed again and is it going to be another sense of failure really talk to our gp about it as well? And all three of us decided, yeah, let's just do it, let's just go. So I asked the patients that I had met on facebook that had been to see them, because I, you know, again done the research, got in touch with a few people and they said go to the lady. It was a lady and a man.

Anneke: 7:16

So I went to the lady doctor and she did a fair few investigations and she referred me to the other one, who was an endocrinologist, because some of the hormone stuff was wrong and indeed I had adrenal insufficiency, started getting treated for that. He continued to investigate because all sorts of things were found, because my body was ready to give up A few weeks later. I said that it's not working. I believe it's right, but it's not working. He said I should have said, but I thought at the time, if we treated the cortisol deficiency, this would disappear, as it often does, but you have lupus as well, so that needed to be treated.

Anneke: 7:51

Then a few years later, I was being treated in the day hospital every week with drips and somebody shared a room with me came in and we started talking and I was like you've got adrenal insufficiency, I'm so sure you've got adrenal. You really you should look into it. I mean I might be wrong, who am I to say, but look into it? And she said I am so sure you've got EDS, you really need to go find out. I said where do you? I've never heard of it. How Well, you need to go to the genetic department in the university hospital. I said well, actually I've got an appointment there because my son had already had we had communal symptoms. He also had adrenal insufficiency, so we'd been referred to the genetic department. Months later I saw the lady again in the corridor of the hospital and I shouted oh, it's you. At the same time as she shouted it there's something to tell you. At the same time as she shouted, it turned out we both had both diagnoses.

Anneke: 8:45

Wow, that's incredible if we hadn't met, we'd have just soldiered on.

Linnea: 8:50

It truly helps when you meet others, connect dots sometimes. I love that.

Jen: 8:55

So my question would be did you see her again and again each time you went?

Anneke: 8:59

Absolutely. I get a feeling you might have read the book, have you? No, not yet. Okay, I'm not asking that to give you the feeling that you ought to have. I'm just asking because that's described in there.

Jen: 9:12

I think that was me being hopeful, that now you had someone that you could lean on and she could lean on you.

Anneke: 9:18

Exactly. I had a pal there and we asked could we, whenever we're both here at the same time, could we share a room? And they were very much in favor of that. There. They were very, very good there, and so we did for a very long time and we learned so much from each other about coping with it but also about because initially at the university hospital for both my son and I, they had said well, you're somewhere on the spectrum between HSD and EDS and in Belgium if you've got a HSD diagnosis you have no special rights to anything whatsoever.

Anneke: 9:51

If you have EDS you do. You have the right to daily physio, for example, and things like that. And again I've heard it said I've not checked because I just have to get my priorities right and I can't do all that research at the moment. But I have heard that the powers that be now cap the amount of EDS diagnoses that are allowed, of HEDS, because of course with the other ones you can see it in the genetic test, they show it, so you can't deny it. But HEDS you can deny, you just give them an HSD diagnosis and then they don't cost anything.

Jen: 10:27

Do you mind telling listeners what exactly both of those are?

Anneke: 10:30

Yeah, to any patient that I know they're exactly the same thing. It's not so that they haven't managed to get an elitist thing going on. I think that could easily happen, but I've not seen it happen anywhere. Heds stands for hypermobile spectrum disorder and now HEDS has more specific criteria. It's a long list of criteria and, yeah, they find ways of you not meeting all of those as soon as you don't meet one, but you meet all the others. It's HSD, it's ridiculous.

Linnea: 11:04

It really is ridiculous. Yeah, I did not realize they're similar, but they can decide how you're treated.

Anneke: 11:13

They are, like I say, say among patients. There's a real brother and sisterhood. There it's. You know we're not letting that happen to you. We are, we're having to, but you know we're here for you.

Jen: 11:22

You're one of us, don't doubt that there's some beauty in when we meet other people that are like us. We, we want to help, we want to share the knowledge that we have. If there's something that works for me, I want to tell you. Just want to share the knowledge that we have. If there's something that works for me, I want to tell you, just in case it'll help you.

Anneke: 11:38

And this is what happened. The lady I was talking about said well, you're on that spectrum and at that point the rules weren't yet as they are now. But it was already the case that if you had HSD you weren't, and I was on that spectrum somewhere. They didn't give me a clear EDS diagnosis, so I wasn't getting the rights that I should have been given. And she said you should go to this particular professor and take your kid with you. We did and spent a long time there just talking everything through.

Anneke: 12:10

He said yeah, I could say you're somewhere on the spectrum, but if I hear how disabled you are because of it and I hear how both of you are because of it and how it interferes with your every single day life, then to me it's reasonably obvious that the diagnosis should be HE. He says I will put that down and nobody will question me because he's one of those top guys. He's for people who know connective tissue disorders. He's the Lewis in the Lewis-Ditts syndrome. He's Professor Lewis. He was like if I put that on paper, they'll try and say you haven't got it yet.

Jen: 12:44

How did these diagnoses change the way you approached your healthcare and your life overall?

Anneke: 12:49

Well, of course I started to go to doctors again. I did a lot of research into the conditions as I was diagnosed with them. I mean not as I would have done as a professional. I had a postgrad in health research. I didn't do it at that level, but I do believe I informed myself more than otherwise I would have done, I think, if I didn't have that background which meant I could speak up and ask questions, relevant questions, one of them being have you ever heard of? I actually had that in an A&E department. The doctor came and said can you just say it again? What was that? Because I need to look it up on the internet.

Jen: 13:24

Maybe you better ask us rather than look it up on the internet in that case, there's something a little scary about a doctor saying I need to go look that up on the internet.

Linnea: 13:34

They don't know. I don't think in school they learn all the different autoimmune diseases and that is, I think, if they're treating somebody they need to be. I'm not sure if EDS is an autoimmune or any connective disease. I think there's so many like this that doctors don't see every day in the emergency room.

Anneke: 13:53

Yeah, I think for a lot of patients they will say yes, I think you're right For me.

Linnea: 14:17

Don't even ask what inspired you to become such a strong advocate against medical gaslighting and how do you define it based on your experiences. That's a heavy question. That was what inspired you to become such an advocate for medical. Well, let's start there I am.

Anneke: 14:29

I had, I had an operation and it made me a lot better. So what was the question?

Linnea: 14:44

what inspired you to become such a strong advocate against medical gaslighting Once.

Anneke: 14:50

I started to get better with the adrenal insufficiency, the lupus kind of took off and I honestly think it's a different kind of lupus. I've seen it in other Ehlers-Danlos patients who had lupus and nearly you know they were getting closer and closer to death with it until they had the eds diagnosis, got the right treatment for that and the lupus kind of went back to zero. But I'm careful with that because it's been two or three years now that I've been able to stop that medication, um, and I think it's gone. But you know it could just kick back up again and I've gone off what you've asked, haven't I now? What was it you asked?

Linnea: 15:34

It's okay. Just how do you advocate against medical gaslighting?

Jen: 15:38

My guess is you have a bad experience with gaslighting, and I'm guessing that's what's brought you to where you are today.

Linnea: 15:44

Yeah, yeah, I think we've all been gaslighted at one time or another by a doctor.

Anneke: 15:49

Yeah, and I didn't know the terminology for that at all, it was just part of what it was.

Linnea: 16:00

I didn't you know, it just came naturally to you. You're not only fighting for yourself, but you're fighting for other patients, so their road to where you're going is a little less hard.

Anneke: 16:28

ME-CFS patient. So when the terminology changed, you know, and then it turned out my child had similar diagnoses as I had. We had to adjust to all that and I did notice that I was treated differently. I was treated with much more respect by the ones who knew those conditions or were familiar with them enough. The ones who weren't usually the ones who completely weren't. They listened a lot and they seemed to trust a lot of what I was saying and how I was saying it. The ones that kind of knew a little bit. They were a nightmare because they were like there's no way you can be that ill if all you have is being a bit more flexible than the rest. Hang on a minute. Eds is just a little bit more complex than that. So it took a very long time.

Anneke: 17:10

For me. The attitude that doctors and professionals had towards me became much more trusting, but I couldn't really trust them. It was like the quote between them changed. It used to be most of them were medically gaslighting me without me knowing those terms. I knew, like I said at the beginning, the ones that were there to care rather than to cure, because that's what we can, and that quote changed that there were less, that were less respectful of me, but they still existed.

Anneke: 17:42

But I got gradually better because with my ME-CFS diagnosis there'd been a refusal to investigate things further and so, for example, I had a lot of back pain and after I had the adrenal insufficiency and the lupus diagnosis and treatment for it, I kept having that pain. I mentioned that to the endocrinologist because he was doing all these things. He was very broad-minded and he also knew that if you had an ME-CFS diagnosis originally he would be the one who would be willing to look further. So he did an endocrinologist and he wrote an MRI for me and with the results I was sent to the neurosurgeon who said this needs two operations. We need to have the time in between as long as you can possibly bear it so that it can heal as well as it can heal. There was just nothing left between two of my vertebrae, nothing. It was just bone on nerves, on bone, and in fact when he'd operated on it he said I'd had to hardly clean Normally I have to clean it all out before I put the thing in that he puts in and he hardly had to clean it at all. There was just nothing there. So I became different in my body, in the way I could live my life. That changed who I was on the inside as well, because I had been bed bound for years and I gradually, slowly, became not so.

Anneke: 19:16

But then, how do you plan that? How do you work around it? What does work for me? What can I do, what can't I do? And meanwhile I'm looking after a married and everything goes to him. Right from the start he said you do the thinking, I'll do the doing. There was some search there like how do we rebalance that somehow? And also as a mum I mean, that had been my big dream from childhood I could suddenly take on much more of the mothering role, but then often that was followed by post-exertional malaise. So there was a lot of that that changed. That was the original question, wasn't it that I couldn't phrase?

Jen: 20:58

the answers to Do you feel like your professional background in occupational therapy and health research influenced your advocacy work?

Anneke: 21:07

Absolutely, absolutely. Yeah, I didn't start advocating at all, even when I'd started writing the book, when I'd been encouraged to. There's a story to that which we could come to if you want me to. But I started writing the book. I still didn't really have the term medical gaslighting in mind. By then.

Anneke: 21:27

I was clear about it being having been a form of medical abuse and I started to write the book, thinking I was writing about relatively recent history and as I started writing it I'd read about. I knew I could write reasonably well. But to write a book is something different. So I did some online training free online training about how do I do this. One of the things I learned was build a community now so that you have to have some people chomping at the bit waiting for your book or you'll never sell it. So I started doing that and whoa, since then this is now it'll be two years ago soon the depth and breadth of medical gaslighting, the damage it does.

Anneke: 22:13

It was to the point where I was halfway through the book and thought my story is nothing compared to some other people. I've seen both of you gasp at some of my story already. Really, in comparison to some people, it means nothing at all. I considered stopping because it's minimal compared to what some people have been through, and then I thought, no, because of who I am, but also because it's minimal in comparison, I can give a voice to it. So I will. That's what made me stuck to it, and it was with. How did I come to the medical gaslighting? I know Stephen Fry. Do you know Stephen Fry over there?

Jen: 22:49

That name does not sound familiar to me. What about you, Lenia?

Anneke: 22:52

He's a UK comedian.

Jen: 22:56

Comedy is almost wasted upon me, according to my family. Okay, whatever, you have to explain jokes to me. My humor is very unusual.

Anneke: 23:07

Yeah, okay.

Linnea: 23:09

I don't agree with her on that statement I'm just going to say right now Really. And maybe it's just because we get each other and our jokes make sense to us.

Anneke: 23:19

Yeah, that our jokes don't make sense to our family. I have friendships like that, where we can just throw each other a look and burst out laughing and all the others are like what's wrong with them?

Jen: 23:29

They're clueless every time.

Anneke: 23:32

Anyhow, stephen Fry in an interview talked about the film Gaslight. I went to look it up afterwards. It came out in 1944, I think. First it was on the stage in 1932 and then became a film in 1944. Back in mind, film set, I believe, in London in one of those terrorist houses which are quite high. It was about a married couple.

Anneke: 23:57

I had heard the term gaslighting but never related to anything medical. I'd never really understood it because the behaviors and the attitudes that came with it. I didn't see a link with gas light and I need that to grasp it right. He told us about this film and he said this couple uh feature in it and the lighting in the house is run on gas. The husband, when he leaves the wife alone, whether he's going outside or just working upstairs or something, he goes into the attic and twiddles with the gas so that she gets a flickering or a dimming of the light. But whenever he's present the lights are perfect. So she says you know, is something wrong with these lights? Well, I don't see anything wrong with these lights. It keeps happening, to the point where she ends up questioning her own sanity. I must be mad.

Jen: 24:46

I think I can relate to that.

Linnea: 24:48

I was going to say I relate a lot and I've had we both have had doctors gaslight us and you walk out of the office thinking you've lost your mind.

Anneke: 24:58

No, my husband no, no, no.

Jen: 25:01

I just mean messing with me. That's what I mean.

Linnea: 25:03

Yeah, my husband would mess with me like that, but he's very caring and yeah, he's my advocate when I can't. But I love that.

Anneke: 25:11

I want to look for that movie now the response that I've just seen in you two is exactly what went through me. I thought you would call that medical gaslighting. I thought I'd come up with a new term. I was, wow, I can make something about this. Yeah, yeah, yeah, and I typed it in. They're already talking about medical gaslighting all over the place.

Anneke: 25:30

But what I did notice? I noticed that later I've come to notice that although it's mentioned a lot with differing conditions, it's always mentioned as a sideline to the condition. It's never the focus. And in what I do, the medical gaslighting is the focus mainly to conditions that are chronic. I always say barely visible rather than invisible, because it's always visible to someone somewhere at some point. Fluctuating and or rare diseases, which is a large group I mean, spoonies are one of those, but it actually goes beyond that. But those four I need to find a short term for that Might do some kind of competition at some point. Give them the one that comes up with it a book or something, yeah, so that became my focus.

Jen: 26:16

What do you think are the key steps patients can take to ensure their voices are heard within the medical system?

Anneke: 26:23

The first most important thing is shed the shame and the guilt that you've been fed through medical gaslighting. If anybody's supposed to feel ashamed and guilty about that, it's the ones that did it. I threw the list, but that is the main thing. Before you can do that, you can't do the rest really. Before you've done that, that's powerful to me, yeah, and it'll take a while before you get to that, so that I would really like to hammer home Show consistent self-respect. You may not respect me, but I do Remember the professionals are human too. We end up actually expecting doctors to get it right all the time, to know everything, to be up to date. They're humans, they also. Some professionals do the medical gaslighting in one session and in others it doesn't return because they were having a bad day or whatever. They're human too. So you need that. But you won't get to that if you don't do the overcoming of the shame and guilt.

Jen: 27:20

That's an excellent point. We don't know what's going on in their days as well. There's times where I have wanted to be hard on someone in my care team in the past, and there is one specifically. I put up with him for a year. I should have fired him a long time ago. It's okay to fire your doctor. But, at the same time, anyone that we deal with, whether it be the person drawing our blood, anyone that we're dealing with, we don't know what's going on in their day no-transcript.

Anneke: 28:17

First things that patient come with, they think well, in most cases that's going to be either through the diet what do you normally eat, what do you normally drink, do you smoke, what times do you sleep? You know they'll give lifestyle advice that doesn't work. Come back after a few weeks, okay. Well, we'll describe you something to help you sleep or to keep you awake, or you know, whatever suits or seems to suit. None of it is helping. Of course, your first thought isn't going to be this is something rare. What should we look for?

Anneke: 28:55

Of course your first thought's going to be, they're probably not doing it right, they're probably not following what I've said, or they're exaggerating, or they're imagining, or they need attention that they shouldn't really be needing. So it's a very human thing to do. Also, the thing about making the invisible visible. We don't let people see it. When we go to the doctor, we dress up for it, don't we? We don't go looking like, well, I shouldn't say the word.

Jen: 29:15

We do.

Anneke: 29:18

I went to a museum with my husband in Maastricht he's from there A while ago last year or something like that, and there's a museum there of optical illusions which we love actually. Our son really hates the optical illusions things. He just gets to them, but I love them. And there, with every single exhibition piece, there's a plate that explains. If you haven't seen the two sides of it, we'll tell you how to do it and why your brain has interpreted it like this, when it could also interpret it like that and how it is different Sometimes.

Anneke: 29:54

It's how the light goes in, you know, and it explains how the brain, for safety reasons, makes assumptions on the basis of what it's seen and done in the past. So if I appear like this in front of a doctor, instantly they will think that is how I present all the days of the day and this is kind of average. It can be a lot better and it can be a lot worse, but this will be most of the time when actually this is my level best, which for a podcast. I lived to it all day. I've been binge watching something really stupid on television that I didn't have to pay attention to, you know, from bed, so that I can be like this, and still I was failing earlier on in the talk.

Jen: 30:38

You were not failing.

Anneke: 30:39

Don't be hard on yourself when you realize that and you develop that kind of mildness towards the professional in front of you and you have that understanding, it means you also start to explain yourself in a different way. You start to actually say to them you know, I look like this at the moment, but this is really, I'm going to pay for this when I go home. When I went to see my new GP maybe also about a year ago or something like that my key worker went with me and I had said I'd made the appointment and said I'm making it to have an introduction rather than because I've got something you need to deal with at the moment so that you get a view of my file. And she was quite impressed with that for starters. But after me talking for a while, she said okay, so you're here, you're coherent, you're looking well presented.

Anneke: 31:28

You looked at yourself You're here with a key worker. What am I missing? Which I thought was an excellent question of her. She actually listened to the answers and she's always been very sharp since then about that. She will ask me you look like you're doing okay, but are you? Things like that? So if we realize that and we change how we verbalize what we are going through, like the whole idea of functional hours, I think is a really useful one if that's how your body works. For me it does, but it doesn't work like I have four or five hours a day, every single day.

Anneke: 32:03

But if you take a block of three months, six months a year, you will always end up at about an average of four to five hours all through my adult life, even when I was studying, I was doing a lot more than four to five hours, because I count into that the waking up and getting washed and getting dressed and all that, the feeding, getting fed whether you make the food or not. All that comes in those four to five hours. When I was studying, I was obviously doing a lot more than that. But at the weekend, nothing, holidays, nothing, nothing at all. And trying to explain that once you realize that people are genuinely missing that information and I can't blame them, that is part of my responsibility as a patient, and sometimes, yes, we are too done in to be able to explain that and we don't all have carers who can do that for us, and you know. But the more of us who can when we do, it'll make it a lot easier for those of us. So I think it's important to take that responsibility.

Jen: 33:01

That's an excellent way of explaining it and so important, and to kind of go with that, as we started this recording, I was honest with both of you that I'm not feeling my best and I put no effort in today. But why do we feel the pressure, or put the pressure on ourselves to be put together? Because I'm here, I am talking to two people that so get it. But I felt, gosh, I need to put my best foot forward. Make sure you guys see me at my best.

Anneke: 33:25

Actually, on my YouTube channel you will find an interview with Justine Steckling and on the day itself we were both a mess. Shall we postpone it? And then we both said let's not. Let's make the invisible visible. And you can tell we're both hanging there, going deeper and deeper as the interview continues. You can hear it in our voices as well, and stuff. But I still think it's important that it is there. The thing about the shame and guilt I can't really say that enough. I still struggle with letting go of that. I've now been doing talks about it, written a book about it, been warmly welcomed by the community for doing it.

Anneke: 34:05

I was actually a few weeks ago, called the authority on medical gas. I don't know if you have that expression in English. Actually it's big headed in English, isn't it? In Belgium it's a thick neck.

Linnea: 34:18

Well, I'm glad we had her on here, Jenny. If she's the authority of this, she's the big wig.

Jen: 34:25

Absolutely hands down.

Anneke: 34:28

Well, maybe I'm going to be the big wig in America now. I did a talk to Jacksonville patients I was really proud of that One to New Zealand patients as part of it, on my Facebook page and places like that, I try as much as possible and as much as I can bear it as well, because that's a very important one when you take a role like this, whilst having those conditions not easy. I've just in the last in november, I had one activity a month, one podcast and one talk via online and book fair and something else. It was just too much. I thought I'd manage it, but I did manage it. But I'm still recovering from that. It's been too much, so I need to find out what I can do and how. But also I've tried to be explicit in my words. I've tried to write my blog about how I'm feeling and carrying on and so forth. I've also had my husband every now and again make photos or videos of just how badly I am doing and just show it. This is me today.

Jen: 35:31

It's important for so many reasons. We need people that are feeling the same way that we are feeling to know they're not alone. You're never alone. There's so many of us that are feeling the exact same feelings. We're struggling with the same exact things. We need more people speaking up and sharing their voice.

Anneke: 35:49

One of the things I've tried to do in my book is find a vocabulary to express these things. I mean the functional I was, I found somewhere in our community Don't know who came up with it, so can't refer to that person but I tried, for example, all those different pain episodes in different places, to not just call it pain or a banging headache. I try to find a description, an almost visible description, for each of them Throughout the book. I try to create a vocabulary that people can take along with them or have as a starting point that they can think well, that's not me, but and then automatically you find words that you wouldn't have found. You know, yeah, just we one of the things with our conditions, especially with rare ones, but also with ones symptoms that are just difficult to explain.

Anneke: 36:37

If we use the word exhaustion, I'm pretty confident that the two of you will have a rough idea of what I mean, even though I don't even know what each of your diagnoses are, and so on. If I use the word exhaustion with friends who are relatively healthy and they don't know me very well yet and will come to the end of some kind of activities, and I'm really exhausted and I'll pay for it tomorrow. They're thinking yeah, yeah, yeah, but by the day after tomorrow or by tomorrow and I have a long lie in tomorrow it'll be fine. You know, if I say that to you, I'm completely exhausted tonight. You know I'm going to suffer, and the degree to which you've got a pretty good idea. The same with the pain scales. I think they are useful in A&E. Let me just add that In very acute situations they can be really, really useful, but other than that, there's no point using them, because my 10 is completely different to somebody who's always held these 10. They have a 10 from stumping their toe against the coffee table. I totally agree.

Jen: 37:36

Someone else's plan could be our 20.

Anneke: 37:38

Yeah, yeah. But if we say 20 in A&E then we're looked at like okay. So this is a patient who exaggerates.

Linnea: 37:46

Or you're a drug seeker. Or a drug seeker or attention yeah or addicted to alcohol. That is our issue here in my area is if you go too far, you're a drug seeker. I know what hospital I can go to that don't treat me like that, you know what I mean. I'm sure we all have certain ones we go to and not go to.

Anneke: 38:09

Then when a doctor I don't know goes to a different place where you can get to, or retires or whatever, the fear of who's coming next. And I've expressed this several times to so many caring professionals that I do not even though I'm actually in a really good place in those terms. I've got really good doctors, I've got a good team. There are individuals that I'd rather not have, but on the whole I'm in a luxury position compared to most patients. I do not feel safe in the medical world, I do not feel safe in the social world. I do not feel safe in the social world and I don't think I ever will.

Linnea: 38:45

Being sick is hard, Having a chronic illness. We have degrees without having the degree in our diseases.

Anneke: 38:52

I actually said to more than one of my doctors. I've said this actually. I said look, I fully and that's another one of the realize that they are human. They usually are under pressure of time and a lot of people in the health service are underpaid, even though it doesn't look that they don't know much about it. They don't have the room to actually either look up the condition or look into my file far enough because they look at the most recent things, but the story goes back 30 years or longer in my case, you know. So if they don't have the ability to do that, for whatever reason, I have every respect for that. I fully accept that.

Anneke: 39:42

Only you now have two choices Either you let me suffer because of your ignorance or you trust me to know, and it probably won't know. I probably will never know as much as you would if you did go into it, delve into it and find all that's been researched about it. But you don't have the time and you don't get paid for the hours that you are researching it. So I can understand you're not doing that. If you don't do that, what's your choice? You're going to have me suffer or you're going to listen to me and just follow my lead, yep.

Linnea: 40:11

Good advice.

Anneke: 40:12

Good.

Jen: 40:13

Exactly what message do you hope that listeners would take away from your book?

Anneke: 40:18

Can I turn the question around? I had a physio working on my foot because I've damaged my foot again. He's working on it and I've been kind of testing how much does he really know?

Anneke: 40:29

he knows how to handle his brain foot, but that's, that really is about it anyhow. Um, so I started talking about my book. I found a way in talk and see if he wanted to buy it. He was defensive almost from the first word and he started explaining to me how nobody would ever want to read it. It was very niche. It was really odd. It was very, very odd.

Anneke: 40:53

Of course I didn't get defensive, I just said things like well, that's odd, because I did at one stage have a bestseller I don't anymore now, but I can show you the picture when I was bestseller on Amazon, on the Netherlands and things like that. Like I came third in a literature prize thing recently here in Belgium, which is for a chronically ill person who, by definition, is more isolated in a foreign language because it's in English and we have Flemish here about a niche subject that almost nobody's ever heard of, and to come third. And the people in front of me both of them had eight or nine books out. You know I'm doing pretty well. I think yeah, and I'm not doing this thing again.

Jen: 41:33

I think that's saying something.

Anneke: 41:35

It is saying something, isn't it? Yeah, what was I going to say about him?

Jen: 41:39

What was your question? I asked what message do you hope?

Anneke: 41:42

Yeah. So after this had been going back and forth for a bit and I was staying really calm and just answering him with fact, eventually the session was coming to an end as well and he said so what is actually the message of your book? Then I thought, well, if that had been your first question we'd have had a completely different conversation. I said well, actually I had to think for a while. What is the message? I said the message is that when a patient comes with physical symptoms and complaints, don't blame them for it if you don't know. I've had contact with a lot of people from the chronic conditions world now and I have yet to come across one person, hand on heart, in all honesty, one person that would say that they mind when a doctor says I don't know. None of us so far that I have met have any problem with a doctor saying I don't know. It's few, they don't know. Okay, let's look at what we do know and what we can do about it. Don't know, okay, let's look at what we do know and what we can do about it. And he just looked at me stunned and I thought, yeah, that is the message.

Anneke: 42:46

But to fellow patients that is a message, of course, as well, but there's very much a. You're not on your own. There are ways to build a happy life, but you need to define what that is for you. I can only describe what mine is. There are ways of explaining to people when they don't see and when they don't know. You don't have to be ashamed and feel guilty. You know. All those things are in there To the carers, to the main carers. Those are important things to take away from it as well.

Jen: 43:13

Absolutely Well. Can you guys believe how long we've been chatting? I told you.

Linnea: 43:19

I need to cut this down.

Jen: 43:20

No, I've loved it.

Linnea: 43:24

I have loved listening to you so much I have not only feel seen like in the gaslighting medical, you know, but I've learned so much from you just thinking about it like oh, I didn't think of that, like you know, and that's how to look at it when talking to a doctor yeah, one of the parts of the conversation with this physio when he was being so defensive was that.

Anneke: 43:44

But my book isn't about laying blame. My talks aren't about laying blame. But we need to raise the issues of what goes wrong to be able to talk about it. But my aim is to make us able to talk, to have the conversation about it in both directions and to find ways of. We'll never get rid of it because it's a human response, but we can make it a smaller, make the after effects smaller as well. Care for patients who have been so gaslit that they don't go to doctors, even with things that they should run to A&E with. You know that kind of thing. I think that's really important to open the conversation so important.

Jen: 44:24

I couldn't agree more.

Linnea: 44:25

This conversation is so very important to get out there and I'm so glad Jenny found you so we could share your story, because you and get people over here in America to hear your story and read your book. I can't wait to go order it. Thank you. If I could do it right now without being rude, I probably would have.

Anneke: 44:45

Please do.

Linnea: 44:46

I'm going to be so chuffed to be able to say I sold one. I'm very excited to read more about your story but also learn some things that maybe I could share with my community on my social media pages. I just think that's so important to get that information out, not just to this little group right here, but to so many else. There's so many of us out there that feel so alone, and your book is going to show them that they're seen, even though you haven't met them. You're seeing them with them, just with your words, and I think that is so important.

Anneke: 45:22

And it's very broad. You would think you know that would work for the ME community, maybe for the EDS community, maybe, but actually somebody with cluster headaches has gotten back to me and said you know this is so broad, it's just, it applies.

Linnea: 45:38

It applies to all of us, matter what our illnesses, our diagnosis is. It applies to us all, and we're a group, we're a family.

Anneke: 45:47

Yes, you know, I feel that now. I didn't feel that until very cool.

Linnea: 45:53

I'm sure jenny is going to make sure to have all those links within the podcast once it's posted most definitely.

Jen: 46:00

We will have all the important links available. I'm excited to share you with our listeners. I am too, and we didn't even make it halfway through the questions. You might have to just come back. Oh, yes, please.

Anneke: 46:13

I'm ready. Yep, oh, and I love doing that. I get a lot of fuel from that. You know those things where you lose a lot of energy but gain a lot of different kinds of energy.

Jen: 46:23

Thank you so much for giving your time to us.

Anneke: 46:25

Thank you so much for having me and for helping me spread the word. I so appreciate that.

Jen: 46:32

Well, I guess, listeners until next time. Don't forget your spoon.