Chronic illness doesn't live by a set of rules | Freaks No More!

0:00 There was a neurologist that called me a drama queen.

0:04 [music]

0:03 While I have my CSF leak, it's so much work to be a disabled

0:07 person when you're already disabled and or chronically ill.

0:10 It shouldn't be so hard.

0:11 Chronic illness doesn't live by a a set of rules.

0:14 It's not like, oh yes,

0:15 today every Tuesday I can do this, but every other day I can't do this.

0:22 Freaks No More.

0:27 Hey everyone, I am Vicky and this is Freaks No More,

0:29 the show where we tackle myths about

0:31 visible and invisible disabilities and hopefully show you

0:34 how you can be a bit more kind to people who experience the world differently.

0:37 Today I'm speaking to someone who has turned her lived

0:40 experience of living with chronic illness into powerful advocacy.

0:43 She's many things.

0:44 She is a model, content creator, and also blogger from England in the UK.

0:48 And through her platform chronically Jenny,

0:51 she shares what it is like to live with a chronic illness

0:53 and tips and tricks for other people to help them navigate that.

0:58 I'm very happy to welcome Jenny, aka chronically Jenny, in our studio.

1:02 Hi Jenny.

1:02 Hi Vicky.

1:03 Hi.

1:04 Super nice for you to be here.

1:05 Thank you for coming all the way from England.

1:07 No, thank you for having me.

1:08 Flying to Berlin.

1:09 You're very vocal online about having chronic illness,

1:13 but how did that chronic illness journey start?

1:16 Walk me through from the day you got diagnosed.

1:19 I was diagnosed about 10 years ago with my conditions,

1:21 but I kind of got sick before that.

1:24 I was at university when all my different symptoms started starting.

1:29 And it started with a headache basically.

1:31 I had something called a cerebral spinal fluid leak,

1:35 which was unbeknownst to me and is

1:36 quite rare even with my connective tissue disorder.

1:39 Basically, it took kind of two years of figuring out what was going on with me,

1:44 eventually leaving university to go in in search of a diagnosis.

1:49 And I just happened to see a doctor who was like,

1:52 I don't know what's wrong, but I know who will.

1:55 And they sent me on to this doctor and basically got diagnosed

1:58 with all the conditions that I live with basically in one nice little cocktail.

2:03 [laughter] Was it scary?

2:03 Like that first very first time when you thought maybe I should

2:07 go and seek a doctor to the point where you got diagnosed actually?

2:11 Were you scared or Yeah, 100%.

2:15 You know, I think you go through so many emotions

2:17 when you know that something is wrong or you know

2:21 that something isn't right and you're doing all that you

2:24 can to try and express that, but people just aren't

2:28 being receptive to it and it can be a very

2:31 lonely and very scary place to be and it was

2:35 strange when I got my diagnosis because it was like

2:38 a big relief as well as this, oh my goodness,

2:42 these are supposedly rare conditions that I now have to live

2:45 with for the rest of my life and I have no idea what's next.

2:48 So you kind of have those two two sides to it.

2:52 And how has it changed I mean that perception of like

2:54 past few years from the when you received the diagnosis to now?

2:56 I mean, I think I've become a lot more understanding of myself and my body

3:00 and my limits very slowly over time

3:02 and it's something that I'm still working on today.

3:05 When you have a chronic illness and you've got all these different symptoms

3:08 and your symptoms are changing over over time

3:10 and different ones flare up at different points,

3:13 you kind of have to like I think once I learned to live

3:17 with my body and with my conditions rather than fight against them,

3:22 that's when things really changed for me.

3:24 For people that don't know, what is actually EDS and what is POTS?

3:27 So EDS, I have hypermobile EDS,

3:30 Ehlers-Danlos syndrome, but there's lots of different types.

3:32 All of them are connective tissue disorders.

3:34 The stuff that makes our body up and helps it kind of stick together,

3:38 it's often too stretchy, which means it can be really fragile.

3:41 So it means that we can like dislocate joints really really easily.

3:44 It means that we've got quite stretchy skin.

3:46 It means that we bruise easily and that kind of thing.

3:49 Our bodies are working extra hard to keep ourselves in place.

3:53 POTS or postural orthostatic tachycardia syndrome,

3:55 which I love to say fast is my [laughter] little party trick.

3:58 Is a form of dysautonomia.

4:00 So most people when they stand up, their heart rate will rise,

4:04 but people with POTS, our heart rate will go really really fast when we stand.

4:09 I can be dizzy, feel faint, you know, just struggle getting around in the world.

4:14 I can overheat really easily.

4:16 You were lucky I guess to find a medical professional from the very

4:18 beginning that knew what EDS is and knew what POTS is,

4:21 but have you ever encountered people who are not so

4:24 nice and medical professionals that are that can be even dismissive?

4:27 I mean, it took me two years to even get to that point of of finding someone.

4:31 And I had medical professionals that just MRI'd the wrong bit of me.

4:35 Like I was complaining about headaches, right?

4:37 And they MRI'd like my neck down and it was like that's not the problem.

4:40 They're just like it's a headache.

4:43 [laughter]

4:43 There was a neurologist that called me a drama queen while I had my CSF leak.

4:48 And I always wish I could go back to that doctor and be like,

4:51 no, no, you missed something, not not me.

4:55 Talking about frustrating things,

4:56 probably you've encountered many comments from people

4:58 that do not understand what it

4:59 is like to live with a chronic illness or to be a disabled person.

5:02 Behind us we have a spinning wheel that we always have

5:05 in the show and this time I thought we'd do something different.

5:07 I thought we're going to do comments that you, Jenny, might have encountered.

5:11 So whenever you're ready,

5:12 spin the wheel and then and see [laughter] what we land.

5:15 Go.

5:19 Oh.

5:21 But you don't look sick.

5:23 Ugh.

5:23 One of the the very typical things.

5:26 That people think that you have to look sick to be sick.

5:29 Yeah.

5:29 And I think as disabled people and as someone who's neurodivergent,

5:32 you'll understand this too that like we've got so good at masking and just

5:35 getting on with our lives that people don't realize how much is going on.

5:39 Happens inside.

5:40 For me I have to always explain to people,

5:42 especially at work, this is what I need as accommodations.

5:45 And I assume it's like similar for you,

5:47 like you always end up in the situations where you have to explain yourself.

5:49 What does looking ill or looking disabled look like?

5:53 There there is no look.

5:54 You know, disability is so diverse.

5:56 Come on, something different.

5:58 Uh okay.

6:00 Green.

6:00 When people say, but you were fine yesterday.

6:03 This is another really common misconception.

6:06 Again, it's based on the look, right?

6:08 They think that you looked fine yesterday so you'll be fine today.

6:10 But often we might have been doing something yesterday that we can't do today

6:14 and it's because of the thing we did yesterday that we can't do it today.

6:18 You know, like if I go for a really long wheel in my manual chair,

6:23 I'll be exhausted and I can't do that the next day.

6:26 If someone's ambulatory, they might be able to walk one day and not the next.

6:29 So you can't judge it like chronic illness doesn't live by a a set of rules.

6:35 It's not like, oh yes,

6:36 today every Tuesday I can do this, but every other day I can't do this.

6:42 Or blue?

6:42 Blue.

6:43 Red.

6:43 Okay.

6:44 My migraine is just a simple headache.

6:46 People assume it's just like a simple as like, okay, so then that's fine.

6:49 Then like you just take a rest for like 1 hour and then you'll be fine.

6:53 And actually it's a very different story, isn't it?

6:55 So migraines are not just simple headaches.

6:56 No, and it's a very common condition that affects a lot

6:59 of people and it affects more women than it does men as well.

7:02 And I think that's something to to highlight

7:04 is because that symptom is downplayed.

7:07 Like, oh, it's just a headache.

7:08 Like you can get on with stuff.

7:10 But you know, with a migraine there's symptoms before the actual headache hits.

7:14 There's often symptoms after the headache hits.

7:16 Sometimes people with migraine don't have a headache at all.

7:19 It's this big misconception and it has so many different symptoms and I

7:23 think it's important to remember that there

7:25 are so many different types of headaches.

7:27 And migraines can have you out for a week or more.

7:30 You know, people with chronic migraine,

7:31 it's it can be you know, the whole month.

7:34 How do you manage it on particularly difficult days?

7:36 Like on on days where like you say, okay, my body really cannot do this today.

7:40 When you have like a really intense migraine or headache,

7:42 how do you how have you learned how to manage it?

7:45 Oh, if I have a migraine, I'm going to bed.

7:46 Like there's no [laughter] there's no question.

7:49 I think when you have a chronic illness, it's hard to say, no,

7:52 I'm really like I need to take the day off sick because you know,

7:55 we function at a level that most people would take the day off sick.

7:59 Yeah, [laughter] yeah, yeah.

8:00 So your baseline is already higher than most people's baseline.

8:03 Exactly.

8:03 So saying, okay, no, I'm actually having a sick day is quite hard.

8:07 It can be quite hard and I think a lot of my harder days,

8:11 mainly with fatigue or pain, I'll just curl up on the sofa and you know,

8:15 my my support worker will read the emails to me and I'll just say roughly

8:20 the beginning when you still were figuring out, okay, what your body needs,

8:25 were you afraid of like, yeah,

8:27 how your family, friends, close people would react?

8:29 For example, when you say like, okay, I can't do this now.

8:31 I need I need some rest.

8:32 I can't work on this day.

8:33 I need I need time off.

8:34 Were you ever like thinking, oh,

8:36 I don't know how my close people would react to that.

8:38 I mean, it's something that still scares me sometimes to this day.

8:42 And what I've learned is that you know, you don't owe anyone an explanation.

8:46 You know, no is a full sentence and also just saying, hey,

8:50 I just need a bit of more time as an accommodation, as an access need.

8:54 You don't have to say, oh, I had a headache and I didn't have support

8:57 and I didn't have this and I didn't have that.

8:58 We all know that there are a lot of reasons why flare-ups might happen,

9:02 but we don't need to like express all of that to someone when we're just asking,

9:09 hey, can I just have an extra day?

9:10 What you say, no is a full sentence.

9:12 I think a lot of people don't really get that and they keep pushing.

9:14 I remember once I got called out on in a meeting that I was coming

9:18 in on on my day off in in a previous job because I was yawning.

9:22 And they were like, oh, are we keeping you up, Jen?

9:24 Like to the whole group.

9:26 As a joke and it it hurt.

9:28 Like it really hurt because I had been doing my other job on the Sunday,

9:32 which is why Monday was my day off.

9:34 I'd come in on a meeting on my day off and I was exhausted.

9:37 But you shouldn't call anyone out.

9:39 It doesn't matter the reason, you know,

9:41 whether someone has chronic fatigue like me or you know,

9:44 they might have just been up all night

9:45 with a sick relative or a child or you know,

9:48 there's there's no we don't need this kind of culture in in work and we

9:52 should all be a little bit kinder

9:53 and more understanding that you know, we're people.

9:56 When you mentioned it a little bit about relationships,

9:58 people can assume that your partner is your caretaker.

10:02 If you've heard comments like these, how do you navigate around them?

10:05 I mean, I think my partner, Ian and I have been quite lucky that we

10:08 don't get a lot of these comments like directly,

10:09 but it kind of comes from the more like, "Oh, he's so good.

10:13 He can He does all this." And it's like,

10:16 but it's like the thing that um parents get, right?

10:19 It's like if the if the dad's looking after the kids,

10:22 he's babysitting, whereas if the mom's looking after the kids, she's parenting.

10:25 And it's like, come on.

10:27 [laughter]

10:27 You know, it's similar in that way with disability cuz it's like, "Oh,

10:30 well, he must do everything for you." And whereas we have our own things.

10:35 Like, yeah, Ian does most of the physical

10:37 stuff because I can't do so much of that.

10:39 But the planning and the organizing, like, that's my hyperfocus brain is like,

10:43 "Yeah, okay, I'll do that." You know, like we're getting married uh in May.

10:47 Congratulations.

10:49 [laughter] And I've planned everything for the wedding.

10:50 Like, what's he done?

10:52 Like, he turned up to a wedding meeting and was like,

10:55 uh "So, what food are we having?" [laughter]

10:58 I was like, "We're not at that bit yet." But you know,

11:00 we all have strengths and our weaknesses

11:01 that we bring to Like in any relationship, really.

11:03 It's not very relationship.

11:05 There are going to be people that do more

11:06 of one thing and less of the other thing.

11:07 That's exactly how it is in a is it in an interabled relationship.

11:11 Can you tell me a bit more about

11:12 how specifically Chronically Jenny started as a project?

11:15 to go and see my um friends in what would

11:18 have been my final showcase at uni um before I left.

11:21 And my friend Becky just said to me,

11:23 "You know, you'd make a really good vlogger, Jenny." [laughter]

11:27 And I was like, "Yeah, okay." And I'd had a bit of a bad experience with YouTube

11:30 in the past when I was a kid and like just some some nasty comments.

11:33 But I was like, "No, okay, this is the time to Try it out.

11:37 to try it out again." And it was helping me get back

11:39 into deadlines cuz I knew I was going back to uni that September.

11:43 And I was like, "Okay, I need to get back in the swing of things." Yeah,

11:46 and it just started in my bedroom talking about my conditions.

11:49 I wanted to give people the guidebook that I never have.

11:53 Yeah.

11:53 Because when you become chronically ill disabled, they don't go, "Here you go.

11:56 Here's a Here's a pamphlet.

11:57 Here's all the things.

11:59 [laughter] These are all the tools that you can use.

12:00 These are all the websites you can visit.

12:01 And these are all the hacks that you can Yeah.

12:03 Literally.

12:03 So, that's what I wanted to create and be a resource for people that, you know,

12:07 newly diagnosed or whether they've, you know,

12:09 lived with a condition for their whole lives.

12:11 I wanted them to be able to come to Chronically Jenny and be like,

12:14 "I can find something that's going to help me today."

12:17 And I think what you do is lovely because this is

12:18 exactly what the mission of Freaks No More is as well.

12:20 We want to reach out to people who might not

12:22 know actually what it is like to live with EDS.

12:25 Yeah.

12:25 They might have never met a person.

12:26 That's maybe the first time that they're hearing the show now.

12:28 They'll be like, "Okay,

12:29 I didn't know." How do you decide the parts of of your life that you want

12:33 to share online and the parts that you

12:35 might not want to share online and keep private?

12:37 How do you How do you navigate that as a content creator?

12:40 I think that's a really hard one.

12:41 And I think when I was younger and newly diagnosed, I was overwhelmed.

12:46 And I had probably overshared.

12:47 Like, there's probably stuff [laughter] in my old YouTube videos.

12:49 Like, if you go back and watch my old old vlogs,

12:51 like, I'll just be crying on the internet.

12:53 And like, I know that exists, and that's [laughter] fine.

12:56 So, that's okay for you.

12:56 Like, you don't mind that these These are the past

12:59 me and this is okay and That's what I mean.

13:00 It was the past.

13:01 It's not something I would do today.

13:03 Like, I I have people in my life.

13:05 I have a therapist that I would I would go and do

13:08 my my crying um overwhelmed moment to rather than the internet.

13:15 [laughter]

13:15 But I know that exists of me and I don't want to erase that.

13:18 Now I have more personal ways of of managing that kind of thing.

13:22 I just want to enjoy a break with my partner and my dog rather than being like,

13:27 "Oh, well, I have to get this for content

13:28 thing." And you need a break for yourself.

13:29 So, that's also something I'm trying to learn and put

13:32 my phone away when I'm not on a work trip.

13:36 [laughter] So, you also do modeling for all sorts of brands and commercials.

13:38 How did that start?

13:40 It was kind of just off of the back of um of my Instagram, really.

13:44 And especially, I love working with um disabled-owned brands where I can.

13:48 I have a great disabled-owned business directory on my website

13:51 um because I really want to support small disabled-owned businesses.

13:55 I started um working in adaptive fashion and stuff.

13:58 And it's so nice seeing adaptive fashion really start to come out

14:03 of its shell and not be this kind of, you know, ugly poncho.

14:07 Yeah.

14:08 [laughter] And be a really nice stylish trench coat.

14:10 kind of thing.

14:11 It's like starting to be more Exactly.

14:13 Do you sometimes get not so nice comments from people that follow you?

14:18 It can be really hard sometimes because,

14:20 you know, some of the time it's just trolls.

14:22 Like, trolls will be trolls.

14:24 And other times it can be really difficult

14:26 because especially something that I come across relatively frequently

14:30 is like people wanting answers from me immediately because

14:35 I've been able to help them in some way.

14:36 And like, I always want to do my best to help, but You can't do everything.

14:40 do everything.

14:41 I can prepare the content that I've got, but I'm not a medical professional.

14:45 I can't answer that kind of question.

14:46 I can't I can only speak from my lived experience.

14:49 And I can't solve every issue for every person.

14:52 Like, I'm trying my hardest,

14:53 but I'm also chronically ill and I don't have that capacity.

14:57 And how do you deal with people who like,

14:58 let's say they love your content and they're not criticizing it,

15:00 but people that say like,

15:02 "Oh, you're such an inspiration." And these kind of like

15:05 a little bit condescending comments

15:06 that maybe people think that they're well-meaning, but they're actually not.

15:10 I make a video about it.

15:13 [laughter] It's a good solution.

15:13 Yeah, I have done content about the inspirational kind of trope.

15:17 And then I have like disabled and chronically ill people saying, "Oh,

15:20 but I find you really inspirational as a content creator

15:24 and as someone with a disability." And it's like, that's different.

15:27 It's understanding the nuance of like people saying, "Oh,

15:31 you're so inspirational." When all I've done is made a cup of tea for myself.

15:34 And like saying, "Oh,

15:36 you're really inspirational to me as a speaker, as a model."

15:40 because you do public speaking, because you educate others,

15:42 and so on versus you just living your life.

15:46 Exactly.

15:45 But you happen to be chronically ill.

15:47 Yeah.

15:48 So, that's the inspirational part because you can do

15:50 all of these things that everyone else can do.

15:52 But is it that that boundary, I guess, that you need to

15:55 You do history content, a lot of history content.

15:57 And everyone that listens to the show knows that we have a time machine with us.

16:02 So, we have a button.

16:04 I love the button.

16:04 When we press the button, [laughter] we're going to go back in time.

16:07 And I thought it would be cool to explore a little

16:10 bit about how the disability rights movement in the UK,

16:14 where you're from, evolved.

16:15 So, whenever you're ready, we're going to press the button together.

16:19 And then we're going to go back in time.

16:20 Okay, are you ready?

16:21 3 2 1.

16:26 Disabled people in the United Kingdom have

16:28 been organizing protests for over a century.

16:31 In the 1920s, the National League of the Blind staged

16:34 marches to London to demand better working conditions and pay.

16:38 Through the 1970s, disabled people campaigned to have

16:41 better support with mobility and accessible cars.

16:44 In [music] 1972, Paul Hunt wrote a letter

16:47 to the Guardian newspaper calling for equality for disabled people.

16:50 His words helped ignite a collective movement against discrimination.

16:54 In the early '90s, buses in the UK generally lacked ramps,

16:58 making it impossible for wheelchair users to use public transport.

17:02 Activists Barbara Lisicki and Alan Holdsworth

17:05 co-founded Disabled People's Direct Action Network.

17:08 Disabled people organized sit-ins, handcuffed themselves to buses,

17:12 and chained their wheelchairs to underground station entrances to force change.

17:17 In 1992, disabled people gathered to protest against the TV show Telethon

17:22 as they felt that images shown portrayed disabled people as objects of pity.

17:26 Protesters wore T-shirts and carried signs bearing the now iconic slogan,

17:31 "Piss on pity." After years of campaigning by disability activists,

17:35 in 1995, the Parliament passes the Disability Discrimination Act,

17:40 making it illegal to discriminate against

17:42 disabled [music] people in the workplace.

17:44 From sit-ins to street blockades,

17:46 the disability rights movement was never quiet.

17:49 It was loud and relentless.

17:51 And it is still shaping the world we move through today.

17:57 So, we're now back in the real world.

17:59 [laughter] Back in 2026.

18:00 Back in 2026.

18:01 How did you decide to do history content

18:03 and talk about disability history uh in your platforms?

18:06 Again, it was just the more I learned and the more things I found interesting,

18:11 the more I wanted to share.

18:12 And I think there's so little known about this kind of history.

18:16 And And equally, it's because disability history is is kind of so new,

18:20 really, because a lot of the activism was kind of, you know,

18:23 in the '70s and, you know,

18:25 post-war was really when kind of disabled people became more common.

18:31 [laughter] But it became more more known and more

18:32 talked about and therefore more activists kind of appeared.

18:35 And I think there's such interesting things that have happened all over

18:38 the world in kind of disability history terms that is so interesting to, yeah,

18:41 learn about and and share.

18:43 I think it makes people realize as well, oh well,

18:45 it was only in the '90s that people were fighting for access to get on a bus.

18:49 Like It's so recent in history when you think about it.

18:52 That's like, what is the future of Chronically Jenny?

18:55 So, what do you [laughter] on doing with uh with uh What do you Do you

18:59 want to continue doing what you're doing and be a content creator?

19:02 Yeah, 100%.

19:03 Like, you know, I've been one of those people that's very lucky

19:05 to kind of accidentally fall into a job that they they love.

19:08 Last year, I did my big like 30

19:09 for 30 challenge where I tried like 30 new things.

19:13 I, you know, and it took me from, you know,

19:16 kind of simplish things to things like adaptive skiing and flying a plane.

19:22 And saw that series What was it called?

19:25 Like Average Disabled Jenny versus Average Disabled Jenny.

19:28 I still do.

19:29 And I'd love to do a bit more of that, trying different sports.

19:31 Oh, I've done wheelchair basketball.

19:33 That was one I really wanted to do.

19:35 Wheelchair tennis is high on my list.

19:37 I'd love to go to the next Paralympics in LA, not competing and everything.

19:40 I am Average Disabled Jenny for a reason.

19:42 I always want to try something new that people

19:44 don't expect disabled people to be able to do.

19:47 And then show other disabled people like, "Hey,

19:48 you can You can go and to this." Uh you might have to travel a little way,

19:52 but you can you can do it.

19:54 What do you think still needs to change?

19:56 Not not in relation to just sports, but in general in in the UK.

20:00 What is still missing?

20:01 The biggest misconception is that like when you become disabled you

20:05 get handed everything you need and that's not the reality at all.

20:09 As I say even with the sports like you have

20:11 to really search and there's sometimes you know we've contacted

20:14 people for like a year just to try and play

20:16 wheelchair basketball which you think would be like Just sign up.

20:20 Yeah, yeah, applying for benefits is a nightmare.

20:24 All the bureaucracy.

20:25 Yeah, the forms like it's so much work to be

20:28 a disabled person when you're already disabled and or chronically ill like

20:33 and that's what I I really wish wasn't a thing because

20:36 it shouldn't it shouldn't be so hard to get support in place.

20:40 It shouldn't take years.

20:41 It shouldn't take loads of money like

20:43 no not everyone has those kind of resources.

20:45 Now that you've been through that path,

20:47 what would be your advice to a person who's

20:50 just now starting their journey with EDS or POTS

20:54 and they don't know what to do and they're

20:56 a bit overwhelmed maybe and a bit scared.

20:58 It's when you stop fighting against your illness

21:00 and learn to work with it that things really change.

21:04 I will still have days like I'll still have days where I do everything that I

21:08 shouldn't be doing like I'll I'll overdo it and and I know I I'm I'm very aware,

21:15 but it still happens and I think it's learning

21:17 that we have to adapt and and life will change,

21:20 but it doesn't mean that we can't have joy and we can't have relationships

21:25 and we can't have friendships and we can't do like have all these adventures.

21:28 We just have to prioritize ourselves is something

21:31 that I wish I'd learned a bit sooner.

21:35 [laughter] That's a brilliant advice, Jenny.

21:36 Thank you so much for our conversation and for you being here in our studio.

21:40 No, thank you so much for having me.

21:40 It's been so fun.

21:43 [laughter] I learned so much from Jenny today and I hope you did too.

21:46 Make sure to follow her on @chronicallyjenny and if

21:49 you have any questions or comments to us,

21:50 write to us on our email freaks@dw.com.

21:53 Bye from me and as always be patient, [music] be kind and be understanding.

22:02 Freaks no more.