TRANSCRIPT
Jenni: There was a neurologist that called me a drama queen.
Vicky: Really?!
Jenni: While I had my CSF leak.
Jenni: It's so much work to be a disabled person when you're already disabled and/or chronically ill. It shouldn't be so hard.
Jenni: Chronic illness doesn't live by a set of rules. It's not like, "Oh yes, today, every Tuesday I can do this, but every other day I can't do this."
Vicky: Hey everyone, I am Vicky and this is Freaks No More!, the show where we tackle myths about visible and invisible disabilities and hopefully show you how you can be a bit more kind to people who experience the world differently.
Vicky: Today I'm speaking to someone who has turned her lived experience of living with chronic illness into powerful advocacy.
Vicky: She's many things. She is a model, content creator and also a blogger from England in the UK. And through her platform Chronically Jenni, she shares what it is like to live with a chronic illness and tips and tricks for other people to help them navigate that. I'm very happy to welcome Jenni, aka "Chronically Jenni" in our studio. Hi Jenni!
Jenni: Hi Vicky!
Vicky: Hi, super nice for you to be here. Thank you for coming all the way from England.
Jenni: No, thank you for having me!
Vicky: Flying to Berlin!
Vicky: You're very vocal online about having chronic illness. But how did that chronic illness journey start? Walk me through from the day you got diagnosed.
Jenni: I was diagnosed about 10 years ago with my conditions, but I kind of got sick before that.
Jenni: I was at university when all my different symptoms started starting and it started with a headache. Basically I had something called a cerebrospinal fluid leak, which was unbeknownst to me and is quite rare even with my connective tissue disorder. Basically it took kind of two years of figuring out what was going on with me, eventually leaving university to go in search of a diagnosis. And I just happened to see a doctor who was like, "I don't know what's wrong but I know who will!" And they sent me on to this doctor and basically got diagnosed with all the conditions that I live with, basically in one nice little cocktail.
Vicky: Was it scary, like that first-... very first time when you thought "maybe I should go and seek a doctor", to the point where you got diagnosis actually, were you scared or?
Jenni: Yeah, 100%. You know, I think you go through so many emotions when you know that something is wrong, or you know that something isn't right, and you're doing all that you can to try and express that. But people just aren't being receptive to it. And it can be a very lonely and very scary place to be. And it was strange when I got my diagnosis, because it was like a big relief as well as this, "Oh my goodness, these are supposedly rare conditions that I now have to live with for the rest of my life." And I have no idea what's next. So you kind of have those two sides to it.
Vicky: And how has it changed? I mean that perception of the past few years from when you received the diagnosis to now.
Jenni: I mean, I think I've become a lot more understanding of myself and my body and my limits very slowly over time. And it's something that I'm still working on today. When you have a chronic illness and you've got all these different symptoms and your symptoms are changing over time and different ones flare up at different points, you kind of have to... Like, I think once I learnt to live with my body and with my conditions rather than fight against them, that's when things really changed for me.
Vicky: For people that don't know, what is actually EDS and what is POTS?
Jenni: So, EDS: I have hypermobile EDS, Ehlers Danlos syndrome, but there's lots of different types. All of them are connective tissue disorders. This stuff that makes our body up and helps it kind of stick together. It's often too stretchy, which means they can be really fragile. So it means that we can dislocate joints really, really easily. It means that we've got quite stretchy skin. It means that we bruise easily and that kind of thing. Our bodies are working extra hard to keep ourselves in place.
Jenni: POTS or Postural Orthostatic Tachycardia Syndrome, which I love to say fast, it's my little party trick. Is a form of dysautonomia. So most people, when they stand up, their heart rate will rise. But people with POTS, our heart rate will go really, really fast when we stand up. I can be dizzy, feel faint, you know, just struggle getting around in the world. I can overheat really easily.
Vicky: You're lucky, I guess to find a medical professional from the very beginning that knew what EDS is and knew what POTS is. But have you ever encountered people who are not so nice and medical professionals that can be even dismissive?
Jenni: I mean, it took me two years to even get to that point of of finding someone and I had medical professionals that just MRI-ed the wrong bit of me, like I was complaining about headaches, right? And they MRI-ed like my neck down and it was like, that's not the problem.
Vicky: They're just like "It's a headache".
Jenni: Yeah.
Jenni: There was a neurologist that called me a drama queen while I had my CSF leak. And I always wish I could go back to that doctor and be like, "No, no, you missed something, not me."
Vicky: Talking about frustrating things, probably you've encountered many comments from people that do not understand what it is like to live with a chronic illness or to be a disabled person. Behind us, we have a spinning wheel that we always have in the show. And this time I thought we'd do something different. I thought, we're going to do comments that you JennI might have encountered. So whenever you're ready, spin the wheel and then we see where we land.
Jenni: Go!
Vicky: "But, you don't look sick!"
Jenni: Urgh!
Jenni: One of the very typical things that... People think that you have to look sick to be sick. And I think as disabled people and as someone who's neurodivergent, you'll understand this too, that like we've got so good at masking and just getting on with our lives that people don't realise how much is going on.
Vicky: And what happens inside. For me I have to always explain to people, especially at work, this is what I need as accommodations and I assume it's like similar for you, like you always end up in a situations where you have to explain yourself.
Jenni: What does "looking ill", "looking disabled" look like? Like, there is no "look". You know, disability is so diverse.
Jenni: Come on, something different.
Vicky: Ah okay, green! When people say: "But you were fine yesterday!"
Jenni: This is another really common misconception. Again, it's based on the look, right? They think that you looked fine yesterday, so you'll be fine today. But often we might have been doing something yesterday that we can't do today, and it's because of the thing we did yesterday that we can't do it today. You know, like, if I go for a really long wheel in my manual chair, I'll be exhausted and I can't do that the next day. If someone's ambulatory, they might be able to walk one day and not the next. So you can't judge it. Like, chronic illness doesn't live by a set of rules. It's not like, "Oh yes, today, every Tuesday I can do this, but every other day I can't do this."
Jenni: Blue, blue?
Vicky: Red!
Vicky: "Migraine is just a simple headache." People assume it's just like as simple as like, "okay, so then that's fine. Then just take a rest for like one hour and then you'll be fine". And actually it's a very different story, isn't it? So migraines are not just simple headaches.
Jenni: No, and it's a very common condition that affects a lot of people and it affects more women than it does men as well. And I think that's something to highlight, because that symptom is downplayed. Like, "Oh, it's just a headache. You can get on with stuff." But you know, with a migraine, there's symptoms before the actual headache hits. There's often symptoms after the headache hits. Sometimes people with migraine don't have a headache at all. It's this big misconception and it has so many different symptoms.
Jenni: And I think it's important to remember that there are so many different types of headaches, and migraines can have you out for a week or more. You know, people with chronic migraine, it can be, you know, the whole month.
Vicky: How do you manage it on particularly difficult days, like on days where like you say, "OK, my body really cannot do this today." When you have like a really intense migraine or headache, how have you learned how to manage it?
Jenni: Oh if I have a migraine, I'm going to bed. Like, there's no question. I think when you have a chronic illness, it's hard to say "No, I'm really like... I need to take the day off sick." Because, you know, we function at a level that most people would take the day off sick.
Vicky: Yeah, yeah, yeah. So your baseline is already higher than most people's baseline.
Jenni: Exactly. So saying, "OK, no, I'm actually having a sick day", is quite hard. It can be quite hard. And I think a lot of my harder days, mainly with fatigue or pain, I'll just curl up on the sofa and you know, my support worker will read the emails to me, and I'll just say roughly what I want to say back. That's how we manage it.
Vicky: It in the beginning when you still were figuring out, okay, what your body needs, were you afraid of like, how your family, friends, close people would react? For example, when you say like, "OK, I can't do this now, I need some rest. I can't work on this day, I need time off." Were you ever thinking, "Oh, I don't know how my close people would react to that"?
Jenni: I mean, it's something that still scares me sometimes to this day. And what I've learnt is that, you know, you don't owe anyone an explanation. You know, "No." is a full sentence. And also just saying, "hey, I just need a bit of more time as an accommodation, as an access need". You don't have to say, "Oh, I had a headache and I didn't have support and I didn't have this and I didn't have that." We all know that there are a lot of reasons why flare ups might happen, but we don't need to express all of that to someone when we're just asking, "Hey, can I just have an extra day?"
Vicky: What you say, "No." is a full sentence. I think a lot of people don't really get that and they keep pushing.
Jenni: I remember once I got called out in a meeting that I was coming in on my day off in a previous job, because I was yawning, and they were like, "Oh, we keeping you up, Jen?", like to the whole group.
Vicky: Like as a joke, yeah.
Jenni: As a joke. And it hurt. Like it really hurt, because I had been doing my other job on the Sunday, which is why Monday was my day off. I'd come in on a meeting on my day off, and I was exhausted. But you shouldn't call anyone out. It doesn't matter the reason, you know, whether someone has chronic fatigue like me or, you know, they might have just been up all night with a sick relative or a child or, you know, there's no... We don't need this kind of culture in work. And we should all be a little bit kinder and more understanding that, you know, we're people.
Vicky: You mentioned a little bit about relationships, people can assume that your partner is your caretaker. If you've heard comments like this, how do you navigate around them?
Jenni: I mean, I think my partner Ian and I have been quite lucky that we don't get a lot of these comments like directly, but it kind of comes from the more like, "Oh, he's so good. He can... He does all this", and it's like... It's like the thing that parents get, right. It's like if the, if the dad's looking after the kids, he's babysitting, whereas if the mum's looking after the kids, she's parenting.
Vicky: She's parenting, yeah yeah yeah.
Jenni: It's like, come on! You know, it's similar in that way with disability because it's like, "Oh well, he must do everything for you!". Whereas we have our own things like, yeah, Ian does most of the physical stuff because I can't do so much of that. But the planning and the organising, like that's my hyperfocus brain is like, "Yeah, OK, I'll do that!". You know, like we're getting married in May.
Vicky: Congratulations!
Jenni: Thank you.
Jenni: And I've planned everything for the wedding. Like, what's he done? He turned up to a wedding meeting and was like, "So, what food are we having?" I was like, "We're not at that bit yet!". But you know, we all have strengths in our weaknesses that we bring.
Vicky: Like in any relationship.
Jenni: To any relationship! There are gonna be people that do more of one thing and less of the other thing. That's exactly how it is in an interabled relationship.
Vicky: Can you tell me a bit more about how specifically "Chronically Jenni" started as a project?
Jenni: I went to go and see my friends in what would have been my final showcase at uni before I left. And my friend Becky just said to me, "You know, you'd make a really good vlogger, Jenni.". And I was like, "Yeah, okay!". And I'd had a bit of a bad experience with YouTube in the past when I was a kid and like, just some, some nasty comments. But I was like, "No, okay, this is the time-"
Vicky: To try it out.
Jenni: To try it out again. And it was helping me get back into deadlines, because I knew I was going back to uni that September. And I was like, okay, I need to get back in the swing of things. Yeah, and it just started in my bedroom talking about my conditions. I wanted to give people the guide book that I never had. Because when you become chronically ill or disabled, they don't go, "Here you go. Here's a pamphlet. Here's all the-"
Vicky: "These are all the tools that you can use, these are all websites you can visit, and these are all the hacks that you can, yeah."
Jenni: Literally! So that's what I wanted to create and be a resource for people that, you know, newly diagnosed or whether they've, you know, live with a condition for their whole lives. I wanted them to be able to come to "Chronically Jenni" and be like, "I can find something that's going to help me today".
Vicky: And I think what you do is lovely, because that's exactly what the mission of Freaks No More! is as well. We want to reach out to people who might not know actually what it is like to live with EDS.
Jenni: Yeah.
Vicky: Yeah, they might have never met a person... That's maybe the first time that they're hearing the show now, they'll be like, "OK, I didn't know!".
Vicky: How do you decide the parts of your life that you want to share online and the parts that you might not want to share online and keep private? How do you navigate that as a content creator?
Jenni: I think that's a really hard one. And I think when I was younger and newly diagnosed, I was overwhelmed and I probably overshared. Like, there's probably stuff in my old YouTube videos... Like if you go back and watch my old, old vlogs, I'll just be crying on the Internet, and like I know that exists and that's fine, but that's not-
Vicky: So that's okay for you, like you don't mind that these- "This is the past me and this is okay.".
Jenni: That's what I mean. It was the past. It's not something I would do today. Like, I have people in my life. I have a therapist that I would go and do my crying overwhelmed moment to, rather than the Internet. But I know that exists of me and I don't want to erase that. Now I have more personal ways of managing that kind of thing. I just want to enjoy a break with my partner and my dog rather than being like, "Oh well, I have to get this for content!" thing. And you need a break for yourself. So that's also something I'm trying to learn and put my phone away when I'm not on a work trip.
Vicky: You also do modelling for all sorts of brands and commercials. How did that start?
Jenni: It was kind of just off of the back of my Instagram really. And especially I love working with disabled owned brands where I can. I have a great disabled owned business directory on my website, because I really want to support small disabled owned businesses. I started working in adaptive fashion and stuff, and it's so nice seeing adaptive fashion really start to come out of its shell and not be this kind of, you know, ugly poncho.
Vicky: Yeah.
Jenni: And be a really nice, stylish poncho.
Vicky: Yeah it's no a niche kind of thing. It's like starting to be more visible.
Jenni: Exactly.
Vicky: Do you sometimes get not so nice comments from people that follow you?
Jenni: It can be really hard sometimes because you know, some of the time it's just trolls, like trolls will be trolls. And other times it can be really difficult because... Especially something that I come across relatively frequently is like, people wanting answers from me immediately, because I've been able to help them in some way. And like I always want to do my best to help, but...
Vicky: You can't do everything.
Jenni: I can't do everything. I can prepare the content that I've got, but I'm not a medical professional. I can't answer that kind of question. I can't- I can only speak from my lived experience and I can't solve every issue for every person. Like, I'm trying my hardest, but I'm also chronically ill and I don't have that capacity.
Vicky: And how do you deal with people who like, let's say they love your content and they're not criticizing it, but people that say like, "Oh, you're such an inspiration!", and this kind of like, a little bit condescending comments, that maybe people think that they're well meaning, but they're actually not?
Jenni: I make a video about it.
Vicky: It's a good solution.
Jenni: Yeah, I have done content about the inspirational kind of trope. And then I have disabled and chronically ill people saying, "Oh, but I find you really inspirational as a content creator and as someone with a disability.". And it's like, that's different. It's understanding the nuance of people saying, "Oh, you're so inspirational" when all I've done is made a cup of tea for myself and like saying, "Oh, you're really inspirational to me as a speaker, as a model."
Vicky: Because you're model, because you do public speaking, because you educate others and so on, versus you just living your life, but you happen to be chronically ill. So that's the inspirational part, because you can do all of these things that everyone else can do. But it's that that boundary, I guess that you need to-
Jenni: Yeah.
Vicky: You do history content, a lot of history content. And everyone that listens to the show knows that we have a time machine with us, so we have a button.
Jenni: I love the button.
Vicky: When we press the button, we're going to go back in time, and I thought it would be cool to explore a little bit about how the disability rights movement in the UK, where you're from, evolved. So whenever you're ready, we're going to press the button together and then we're going to go back in time. Okay, are you ready? 3-2-1!
Vicky: Disabled people in the United Kingdom have been organizing protests for over a century. In the 1920's, the National League of the Blind staged marches to London to demand better working conditions and pay.
Through the 1970s, disabled people campaigned to have better support with mobility and accessible cars. In 1972, Paul Hunt wrote a letter to The Guardian newspaper calling for equality for disabled people. His words helped ignite a collective movement against discrimination.
In the early 90s buses in the UK generally lacked ramps, making it impossible for wheelchair users to use public transport. Activists Barbara Lisicki and Alan Holdsworth co-founded the disabled people's Direct Action Network. Disabled people organized sit-ins, handcuffed themselves to buses and chained their wheelchairs to underground station entrances to force change.
In 1992, disabled people gathered to protest against the TV show "Telethon" as they felt that images shown portrayed disabled people as objects of pity.
Protesters wore T-shirts and carried signs bearing the now iconic slogan "Piss on Pity". After years of campaigning by disability activists, in 1995 the parliament passes the Disability Discrimination Act, making it illegal to discriminate against disabled people in the workplace.
From sit-ins to street blockades, the disability rights movement was never quiet. It was loud and relentless. And it is still shaping the world we move through today.
Vicky: So now back in the real world.
Jenni: Back in 2026!
Vicky: Back in 2026. How did you decide to do history content and talk about disability history on your platforms?
Jenni: Again, it was just the more I learned and the more things I found interesting, the more I wanted to share. And I think there's so little known about this kind of history.
Jenni: And, and equally, it's because disability history is, is kind of so new, really. Because a lot of the activism was kind of, you know, in the 70s and, you know, post war was really when disabled people became more common. But it became more more known and more talked about and therefore more activists kind of appeared. And I think there's such interesting things that have happened all over the world in kind of disability history terms. And that is so interesting to, yeah, learn about and, and share. I think it makes people realise as well, oh well, it was only in the 90s that people were fighting for access to get on a bus, like-
Vicky: It's so recent in history. When you think about it, that's like-
Vicky: What is the future of "Chronically Jenni"? So what do you- what are you planning on doing with- Do you do you want to continue doing what you're doing? Being a content creator.
Jenni: Yeah, 100%. Like, you know, I've been one of those people that's very lucky to kind of accidentally fall into a job that they love. Last year I did my big like 30 for 30 challenge where I tried 30 new things. And you know, and it took me from, you know, kind of simple-ish things to things like adaptive skiing and flying a plane and-
Vicky: Yes, I saw that series! What was it called? "Average disabled Jen versus"?
Jenni: "Average disabled Jen" I still do, and I'd love to do a bit more of that, trying different sports. Oh, I've done wheelchair basketball. That was what I really wanted to do. Wheelchair tennis is high on my list. I'd love to go to the next Paralympics in LA, not competing and everything, I have "Average disabled Jen" for a reason. I always want to try something new that people don't expect disabled people to be able to do, and then show other disabled people like, "Hey, you can go and do this".
Vicky: You can actually do it-
Jenni: You might have to travel a little way, but you can do it.
Vicky: What do you think still needs to change? Not in relation to just sports, but in general in the UK. What is still missing?
Jenni: The biggest misconception is that when you become disabled, you get handed everything you need, and that's not the reality at all. As I say, even with the sports, like you have to really search. And there's sometimes, you know, we've contacted people for like a year just to try and play wheelchair basketball, which you think would be like-
Vicky: Just a website and you can just sign up.
Jenni: Yeah, applying for benefits is a nightmare.
Vicky: All the bureaucracy.
Jenni: Yeah, the forms. Like, it's so much work to be a disabled person when you're already disabled and/or chronically ill. And that's what I really wish wasn't a thing, because it shouldn't, it shouldn't be so hard to get support in place. It shouldn't take years. It shouldn't take loads of money. Like, not everyone has those kind of resources.
Vicky: Now that you've been through that path, what will be your advice to a person who's just now starting their journey with EDS or POTS and they don't know what to do, and they're a bit overwhelmed maybe, and bit scared?
Jenni: It's when you stop fighting against your illness and learn to work with it that things really change. I will still have days like, I'll still have days where I do everything that I shouldn't be doing. Like I'll overdo it. And I know, I'm, I'm very aware, but it still happens. And I think it's learning that we have to adapt, and life will change. But it doesn't mean that we can't have joy and we can't have relationships, and we can't have friendships, and we can't do like- have all these adventures. We just have to prioritize ourselves, is something that I wish I'd learnt a bit sooner, I think.
Vicky: That's a brilliant advice, Jenni. Thank you so much for our conversation and for you being here in our studio.
Jenni: No, thank you so much for having me, it's been so fun!
Vicky: I learned so much from Jenni today and I hope you did too. Make sure to follow her on @chronicallyjenni and if you have any questions or comments to us, write to us on our email freaks@dw.com. Bye from me, and as always, be patient, be kind, and be understanding!