Autoimmune Diseases with Kate Middleton, The Wren Project – Podcasthon episode

Speaker Key:

CB       Chantal Boyle

KM      Kate Middleton

VO      Voice Over

00:00:0

VO      

Welcome to The Sunflower Conversations, where we explore the Hidden Disabilities Sunflower and its role in supporting people with hidden disabilities. 

CB       

Before we start, I wanted to issue a content warning. In this episode, we talk about mental health. If you are affected by anything we discuss, please follow up with your healthcare provider. 

Welcome to The Sunflower Conversations, I'm Chantal, your host, and today, The Sunflower Conversations is excited to participate in this third edition of the podcasthon, which is like a marathon of podcasts, so for one week, there will be more than a thousand podcasts highlighting a charity of their choice. Today, I have the pleasure of welcoming Kate Middleton, who is the CEO of the charity called the Wren Project. Welcome, Kate. 

00:01:15 

KM      

Thank you. Nice to be here. 

CB       

I'm going to give a visual description of myself. I'm female. I have brown skin. I have long, brown, curly hair, which is shaved on one side. I've got a few piercings. I'm wearing clear framed glasses, and I have a pink lipstick on. And, Kate, if you wouldn't mind just giving a description of yourself, please. 

KM      

Yes, absolutely. I am Kate. I am White British. I have long, brown hair, brown eyes, and no exciting piercings, I'm afraid.

CB       

Well, mine are causing me grief, to be honest, but I won't take them out because it took a lot of bravery to get them done in the first place. The Wren Project offers listening support to people with autoimmune diseases, throughout the UK. Kate founded the charity after receiving diagnoses of multiple autoimmune conditions. 

Kate, thanks for spending a little bit of time with us today, to help raise awareness of what autoimmune diseases are, essentially, and how Wren Project supports people. Can you, first of all, to start off by giving us a little explanation of what an autoimmune disease is? 

KM

Yes, absolutely. An autoimmune disease is a collection of diseases, and there are officially 80 autoimmune diseases in the UK, but the definition of an autoimmune disease is a bit confused. In the US, there's over 150. But that's an important point that I’ll return to later. 

00:03:04

It's a collection of about 80 diseases, it represents 6.5 million people in the UK, and most of these diseases are quite rare, so together, it's a huge community, but individually, it's tiny numbers. And the scary thing is, most people don't know what autoimmune diseases are, or can't really name many, despite the fact that they're really impacting our country, and the world, on a mass scale. 

CB

Yes, because I think I have an autoimmune disease. I've got an underactive thyroid, would that be considered an autoimmune disease? 

KM      

Underactive thyroid is an interesting one, because lots of people do have autoimmune diseases with underactive thyroid, such as Hashimoto's disease or autoimmune thyroiditis. But you've raised a perfect example of a symptom that most people with autoimmune disease will experience. But again, the definition between what is specifically an autoimmune disease with that symptom, and what is not, is quite difficult for people to get their head around. 

CB       

Yes. Well, hopefully, you're going to help us with that. Maybe we can have a few different examples. Diabetes, is that autoimmune? 

KM      

In principle, autoimmune diseases are, in colloquial languages, when the body starts attacking itself. For a reason that's unspecified, because we still don't know where they come from, the body suddenly decides that instead of attacking viruses and getting rid of them, your body is almost considered a virus itself, so it starts attacking its own immune system. 

00:04:54

I've got lupus and rheumatoid arthritis, and a couple of others as well. But diabetes Type 1 is an autoimmune disease. You will probably have heard of MS, or rheumatoid arthritis. Those are the big ones that most people with autoimmune disease have, but you've got a whole string of autoimmune diseases that attack, really, anywhere in the body. And the numbers can be as small as one in a million. 

CB

Crikey. 

KM      

And you are diagnosed with this disease. You've probably never heard of it. No one else in the world has heard of it. I was diagnosed with lupus, and most people in the US think that lupus is a plant, apparently. 

CB       

Oh, really? 

KM      

Recent surveys suggested that that's what they thought it was, and that's quite a common autoimmune disease. Thinking of the impact on the person, this is totally unknown, and no one else knows what it is, so it feels very lonely, really, from the outset. 

Autoimmune disease spans so many different symptoms, so you can be blind or deaf, or you can struggle to sit down or stand up. There's a huge variety of symptoms. Most autoimmune diseases are invisible. 

CB       

I guess that brings us on to why you set up the Wren Project. Can you talk me through that? 

00:06:20

KM      

Yes. I was diagnosed when I was 17, and I'm incredibly lucky because I've got a family that's so supportive around me, and I've got really great doctors. But the journey has not been easy. Along the way, I've had about six new diagnoses, so I've now got six, and that's quite common. Once you get one, you get more. I've been supported so wonderfully in my physical journey, but to get six diseases over the course of your 20s, I think it's terrifying that I'm not unique. 

CB       

Your body is under a lot there. That's a continual assault, I should imagine. And we’ve done a podcast on lupus, and I know how serious that is, as are all autoimmune diseases. This is the purpose of this podcast, so we're not experts in anything, but it is to expand our knowledge and understanding. To have six of those running concurrently, how has your journey been like? 

KM      

Well, I’ve been in and out of hospital, but it's been difficult. I've had moments where things have become very dark. And I suppose that's probably the answer to the question why did I do this, because I think I could have benefited, and now do, from someone that's independent to talk to, that's not a doctor, because doctors are wonderful, but they tend to focus on the physical. That's not a family member that is devastated about what's happening to you, and loves you so much, and wants to fix it. 

00:08:15

It's not a friend that you just want to pretend like everything's fine, but someone that you can really talk to about what it’s doing to your mental health, and that's the point of the Wren Project. 

CB       

It's an independent listening service. How does that how does that work in practical terms? 

KM      

We wanted to create something that didn't exist already, because we don't want to trample on the good work that other organisations are already providing. And we thought that there was a gap. 

For example, when I was diagnosed with lupus, I had my doctors, I had my family, and then I had organisations like Lupus UK, who provide wonderful advice and support. And if I needed to know about a drug that I was going to be put on, I could talk to the hospital nurse, or I could call up Lupus UK and talk to them about it, get advice from them. But I didn't think there existed a place where I could get ongoing mental health support. Essentially, therapy delivered by volunteers. 

So that's what we've done. We've created a service where you refer. We respond to you quickly, and that's really important to us to do that. We respond to you within 24 hours of your referral, and then you'll be paired with a volunteer who's done this lots of times before. And you'll have that volunteer for three, and up to six, months, and you'll speak to them every two weeks for fifty minutes. 

It's a continuous service, and the point is, it's not one-off, and it's not advice or information. It's someone that you get to know, and they get to know you and hear about what's happening throughout that whole six months. 

00:10:06

CB

You get the opportunity to really show all sides of you and how you're feeling, because it takes a long time to build a relationship, anyway, doesn't it? There are some great organisations, as you've mentioned, such as the Samaritans. I've never rung the Samaritans myself, but I'm not under the impression that when you ring, you get to speak to the same person each time. And that's one of the unique differences here, isn't it? 

KM      

As I mentioned, those organisations that exist, like Lupus UK, Crohn's & Colitis UK, have wonderful people, but you call, and it tends to be a one-off conversation. And they are our biggest referral pathway, so if they have frequent callers that need emotional ongoing support, they send them to us. 

CB       

Okay, because I was going to ask you about the referral. Can you do self-referral? 

KM      

Yes. And 90% of our referrals are self-referrals. It's really easy to refer. You just go online, fill in a form, and we call you within 24 hours. But yes, about 40% of our referrals comes through our partners, which I'm really proud of because it shows that our partners value the space that we're providing. 

CB       

That's right, you're working together, aren't you? It's not fighting. It's not fighting against one another. It's not a competition, in a sense, it's really for the collective benefit of each individual who needs that support. 

00:11:38

KM      

Yes. And if someone had a question about a drug, methotrexate, that they'd been on for ages, and it's making them feel really sick, and they ask one of our volunteers that, we’ll say why don't you reach out to Lupus UK, to ask them that question. Because that's the point. We don't hold that information. We hold something quite different. And when it works with the two, it works well. 

CB       

Do you have a way of measuring the impact for the clients that that ring you and receive your support? 

KM      

So that was really important to us, to start, right from the beginning, and also shows how our service is different. When people refer to us, they're asked to fill in an emotions’ questionnaire, and that literally asks them on a scale, can you rank your distress, your loneliness, your ability to cope, your ability to communicate with people around you. Really focusing on how you're feeling, living with an autoimmune disease. 

And we ask them at baseline, and then every three months, and we hope that the scores will improve, and often they don't, because your autoimmune disease is still as intense at the end as it was at the beginning. The biggest marker we get back is loneliness, so 97% say that they are extremely lonely, when they refer to us. And even if we can change that by a little bit, I think we've done a great job. 

CB       

And would you say that comes back to the reasons that you said prior, in that you can have your doctor, and you can have your family, and you can have your friends, but you're really walking this path, as the person who has received the diagnosis, alone. You're walking that path alone. 

00:13:38

Is that where the loneliness comes from, because those people are trying to fix you, or to make you feel better, or to bring you out of it, rather than really knowing what it's like to walk in your shoes? 

KM      

Yes. You couldn't have summarised it better. I call it isolated within a network. And some people's networks are big, and some people's networks are small, but you can still be isolated. I have a tremendous network, but if you think about the people that are in it, my mom is my confidant in life, but I really want to talk to her about how awful I feel or how desperate I feel, or how hopeless? Would I want to put that burden on her? I do. You've got to maintain that relationship. 

And I've just had a child, my daughter, that's another person that will be in my network forever and will probably become more and more important. But again, the burden you put on those people, navigating that relationship, so that you don't always appear sick. With friends, I don't want to appear to be the sick person. I want to be appear to be the fun person that can down a pint in a minute. A normal person. A normal 20-year-old. Not that I'm 20 anymore. 

CB       

But you were diagnosed from 17, so these are adjustments that you've had to make from a very early age. 

00:15:23

KM      

And having someone that you can talk to, that's not going to judge you at all, and you don't ultimately care about that relationship because their job is for you to be a burden to them. That's literally their job. And I think you won't find that in many other places. 

CB       

You are listening to The Sunflower Conversations. Remember to hit Subscribe. 

KM      

We call them Wrens. People that come to our service are called Wrens, and there's a whole story behind that. But at the moment, we're getting about 60 referrals a month. 

CB       

That's a lot. 

KM      

It's growing very quickly, and 75% of people go on to immediately start appointments. The 25% that don't, might be looking for something slightly different, or might want to wait until they're in a period where they feel like they really need this service, so come back to us later. But yes, we have lots of people that have been through the service and received six months of support, and the aim is to just get bigger and bigger. 

CB       

And do you find, because you've said there's 80 identified autoimmune diseases in this country, 150 in the US, and we do have an audience in the US, as well, that there's a common thread that people want to discuss during the calls? 

KM      

Yes. And it's funny, because a lot of people that refer to us actually have therapists, so we ask why would you want our service? I think people really value a place to focus on the illness and the mental health aspect that the illness is causing. 

00:17:15

But mostly, I think it comes down to three questions, and we talk to our volunteers about this. And I think that the biggest question is, who am I with this disease? I'm so confused about what life is now. Am I just a sick person? 

The second question is, who was I? And I often think back, when I'm in a dark moment, to what was I like before 17? What was life like? And I have this very happy rosy I was just running around. I'm sure it wasn't like that, but your mind creates this person that was very happy before you got diagnosed, and then life just became terrible. And that's difficult. People want to talk about that. 

And the third question is, who did I think I would be? And I think I've struggled with that question the most. If I didn't have this disease, what could I have done? I was on track for so much more. I don't feel that now, but I did for about a decade. And that is a horrible, horrible question to be confronted with. 

CB       

Those three questions are massive questions. They are huge, aren't they? And so, being able to talk about that in a safe space that's not going to impact on the people who really love you, you can just be really honest about how you're feeling. I can really see the incredible value, what Wren Project is providing here, and how important it is, because those questions left unanswered, well, it's torturous, isn't it? 

00:18:59

KM      

Yes. And they're such big question. To go back to isolated within the network, it wld be horrible to burden on people, and I'm sure I have. And I'm not really a burden because people love me and can support me, but it sometimes feels like I am. And so, to have someone where I really don't feel like a burden at all, and I can explore that with truth, to labour that point. 

Some of the people that talk to us of feeling that life is no longer worth living, and who am I with this disease, I'm sick. I'm ill all the time. This is not the life I wanted. And to be able to talk through that without someone replying, it will be okay. Or have you tried turmeric, I'm sure that will solve your problems. 

 But to talk to someone that you say, directly, you're looking at a screen, because your work is online, and you're saying to them, my life is no longer worth living. And that person's response is, I'm so sorry to hear that. Let's talk about it. They're not running away from the scariness of that question. They're confronting it, and they're talking through honestly with you, and not trying to fix it. And there's such value in that. 

CB       

Yes. Do you get a wide age range of referrals, people coming through on your lines? 

KM      

Yes. When I first set up the charity, I thought we created it for young people. 

CB       

Because you were young. 

KM      

Yes, I was young. 

CB       

Still are young. Still are young, I can just say [?]. 

00:20:56

KM      

Well actually, it does vary a lot, according to the disease, but a lot of people are diagnosed in their early 20s. And I thought that our support would be most valuable for the people recently diagnosed, but we didn't actually put any limitations on it. And it's crazy, 30% of our applications are for people that are over 75. 

CB       

Are they really? Gosh. 

KM      

It's actually really evenly spread. And we did a bit of research into that, and you've got people that were recently diagnosed, who are in terrible distress, but you've also got people that have been living with this for 50 years without any support, who are equally as distressed. And you've got people who that are just facing diagnosis after diagnosis after diagnosis. 

CB       

It's a continual battering of a wave over and over again. Do you find that many of the people who work for you, the volunteers, the people who are on the other end of the call, are they driven because they also live with an autoimmune disease, or does that really vary as well? 

KM      

We have 140 trained volunteers, and we have a huge number of applications each month, as well, so it's a race to keep up with the applications. I deliberately set up the project, so that you didn't have to have an autoimmune disease. Because again, that sets us apart from other organisations, because as I mentioned, if you call up someone from Lupus UK, the person will have lupus. 

00:22:37

And there's wonderful things in being able to share your story. But there's also a space, which I believe is just as powerful. of not sharing a story. And that 50-minute session is about you, and you don't have to share it at all, because quite a lot of the conversations that I've had will be, oh, my friend has lupus, and then I'll have to hear about the friend, whereas all I want to talk about is myself. And my experience is probably very different. 

Lots of people that volunteer do have diseases, but we don't talk about them. We talk about the person that needs support. And so, the limelight is on the person that's being supported, not on the volunteer. 

CB

And then, for you, sorry, if you don't mind if we just go back to the beginning, you were diagnosed with lupus to start off with. 

KM      

I've got six. I can't even remember the names. The big ones are lupus, pernicious anaemia, rheumatoid arthritis, myositis. I've had pericarditis, which actually is connected to lupus. Lots of them are connected to lupus and immunodeficiency disease. 

You have the big autoimmune diseases, but then you have hundreds of symptoms, so exactly like you just said, of underactive thyroid, you'll have hundreds of different symptoms underneath each one, and then hundreds of symptoms under the medications and their causes. 

CB       

So that's really quite complex to navigate with that, to know what's the side effect of a medication and what's actually part of my symptoms from my disease. 

00:24:25

KM      

Often, you're treated for the different diseases under different consultants, at different hospitals, and very rarely, those doctors will find the time to be able to speak about you. The person that has to lead all of this is you, who's sick, and manages a lot of diseases. You can see it's a melting pot of confusion, and endless hits of here's another one, you need more meds. 

CB       

It must feel like drowning, at times. 

KM      

Yes. And for me, it's always been writing things down has always helped, but I think part of that is because it's all so confusing. 

CB       

What do you think of the Hidden Disabilities Sunflower? What are your views on it, and are there any scenarios where the Sunflower supports an individual with an autoimmune condition? 

KM      

I think it's wonderful. I think it always makes me think of going on buses, and no one's standing up to give you their seat. And I still wouldn't ask for it. And I'm nine months pregnant now, and I've got six autoimmune diseases, and still, they don't stand up. 

Any way that I could wear something, rather than have to go to them and say, please can I have your seat, because I'm never going to do that. And I hate people saying you look so well, because if I feel like I'm dying inside, having someone say you look so well means that they are totally disconnected to how I'm feeling. 

00:26:16

And then, that is tough because I do look well, so I think the power of having a lanyard, which is a lovely and happy and hopeful symbol, recognised, it can give a voice to people living with invisible illness, of which almost every autoimmune disease is. 

CB       

That's it, isn't it, it really is very, very non-visible, if that makes sense, and I think just being able to go about your daily activities and be able to get that acknowledgement from people, strangers, that there is something happening here. Just because my face looks fresh, it doesn't mean that's what I'm experiencing on the inside. Do you have a nugget of advice for anyone who is feeling isolated? 

KM      

I spent a while thinking about that question. I think that it goes back to what we've talked about a lot, about being isolated within your network. I think one of the most difficult things about invisible disease is that for someone to understand what you're going through, you have to find words. You have to articulate it to yourself before you say the words out loud. And that's really difficult. 

And the arguments I've got in with my partner about this, where he says, why don't you just tell me what you need, and the answer is, I don't know, so not only is there a disconnect to how I'm feeling, and being able to talk about it, but there's a disconnect between what I'm saying, and him understanding. And that gap can just get bigger and bigger and bigger, so you feel more and more isolated. 

I suppose my nugget of advice would be trying to really work in any way that you can to close the void, because often there are people around you that can help and make you feel less isolated, but it's difficult to be able to talk to them. It's difficult to be able to find the words, to tell them what's happening. But try hard and use us to help you do that. And write things down. And in every possible way, try to find the words, so that you can explain to people, or show people, what's happening. Because that's, I think, the key to making you feel less isolated. 

00:28:48

CB

That's really interesting, actually, because it's all about communication, isn't it, and bottling things up, because maybe sometimes being afraid of how it might be expressed if you were to say it, so writing things down is a really good idea. Talking to yourself in the mirror, finding different ways to activate those communication channels, and then, hopefully, over time, it will become easier to be able to do that. So that's really great advice. How can people get in touch with the Wren Project? 

KM      

If you have connection to the internet, you can go to the Wren Project and just press refer, and it takes two minutes to fill in the form. We will call you within 24 hours, and that first call will be trying to find out why you've referred and why you might want support. 

And if you decide, yes, I definitely want to do this, this is the right time, and I want to have support, and you do meet our criteria, which is over 18 and having an autoimmune disease, then we will pair you with a volunteer. And our pledge is to do that within 28 days. And that's it. You get started. And we really pride ourselves on those quick turnarounds because people endlessly are waiting for appointments, so we don't want to be added to that. 

00:30:10

CB       

If there was an ask that you could say at the end of our recording today for the Wren Project, what would it be? You're a charity, so are self-funded by donations, how is your operations, and what would your final wish be for, at the end of the our chat? 

KM      

We are funded through no government funding, no state funding. We're funded through individual donations but also trust and grant applications. But it's really competitive to keep up with trust and grants applications, you have to really fight hard for them and make a case for support. 

And then individual donations. Everyone's got hundreds of charities that, ideally, they'd support. I think it all stems from that. The more money we have, the more people we can train, the more people we can support. I know it's a boring answer that I'm assuming every charity gives you, but yes, it's help us fundraise in any way you can, which is even pointing us to right directions is valuable. Or standing with a bucket on the street. 

CB       

And on socials, it’s the Wren Project, presumably, is it? 

KM      

Yes, we're on all of the socials. And our website is gaining more and more visibility, but to go back to your first question of what is an autoimmune disease, we're the first to pop up on Google of autoimmune disease support. But because not many people know what autoimmune diseases are, even when they're diagnosed with them, we've had to really grow and work hard on that. But we're getting there. 

00:31:52

CB       

Well, congratulations. You did say that you had spent a decade questioning what would you be if this hadn't happened, and what would your life be like, but from my perspective, you are achieving so much and bringing so much to other people who might not have the support network, and the different therapies, and everything else. And so, I think it's absolutely fantastic what Wren Project and you have achieved, so well done. 

And my ask at the end of this recording is that could, please, everybody follow the Wren Project on their socials, and share their posts, to help raise awareness. But also, please share this podcast, so that we can, as Kate says, let other people understand a little bit more about what autoimmune diseases are. 

We haven't gone into so much of the, the causes and effects of the individual diseases and illnesses, but we've got a lot of podcasts on this channel, The Sunflower Conversations, so share this one to start off with, and then go through and see which other ones we've had. And I will be inviting Kate to come back to maybe give a little bit more of an overview of her lived experience of her autoimmune illnesses, if Kate's agreeable to that. 

KM      

Of course. Always. 

00:33:15

CB       

Wonderful. So that wraps up this special episode as part of our podcasthon. I hope you enjoyed it. I'm really excited to be able to be part of the podcasthon because it chimes with the Sunflower. We're trying to foster a society where there's a lot more understanding, empathy, and access. 

Kate spoke about just being offered a seat on the bus, that could make the difference between going out for the journey, making the trip to buy the shopping, or actually just staying at home because it's too painful. So that's the purpose of the Sunflower. 

We are proud to be part of the podcasthon, if I can say the word correctly, I think marathon, but of podcasts, and we'll leave you to discover more podcasts on as part of this podcasthon, from www.podcasthon.org, to discover hundreds of other charities and their causes through voices and talents of amazing podcasters. And thank you very much, Kate. 

KM      

Thanks, Chantal. 

CB       

If you are concerned about any of the subjects discussed in the podcast, please follow up and seek support from your healthcare practitioner. If you enjoyed this podcast, please share it. Leave a rating and review to help raise awareness of non-visible disabilities and the Hidden Disabilities Sunflower. You can also follow and subscribe to The Sunflower Conversations Podcast. 

VO      

Find out more about us, or listen to this recording again by checking out our Insights page hiddendisabilitiesstore.com. You can also find us on Facebook, Instagram, Twitter, YouTube, and LinkedIn. Please help, have patience, and show kindness to others, and join us again soon, making the invisible visible with the Hidden Disabilities Sunflower. 

00:35:31