The Dr Louise Newson Podcast - 37 - Chronic migraine and PMDD: Jessica’s story

Episode Date: December 9, 2025

In this episode, Dr Louise Newson is joined by her daughter Jessica for a very personal conversation about living with chronic migraine, PMDD and the long journey toward feeling well again. Jessica talks openly about the years of debilitating symptoms, the medications that helped (and those that didn’t), the impact on her studies and music, and the frustration of not being fully heard in medical consultations.They explore how hormonal fluctuations contributed to Jess’s symptoms, the role of HRT in stabilising her health and the difference that careful, holistic care made after a long period of uncertainty. They also reflect on the importance of being listened to, the small incremental changes that add up, and why young women deserve better recognition and support when experiencing severe hormonal or chronic health issues.It’s an emotional conversation about resilience, advocacy and the steady work of rebuilding quality of life with a chronic condition.Want more from the podcast? Sign up to my premium offer: https://www.drlouisenewson.co.uk/premium-podcasts Thank you to Vevobarefoot for sponsoring this episode. To get 20% off your first order, use code NEWSON20: https://www.vivobarefoot.com/uk/ LET'S CONNECT  Subscribe here 👉 https://www.youtube.com/@menopause_doctor Website 👉 https://www.drlouisenewson.co.uk/Instagram 👉   / @drlouisenewsonpodcast  LinkedIn 👉     / https://www.linkedin.com/in/drlouisenewson/ TikTok 👉   / https://www.tiktok.com/@drlouisenewson Spotify 👉 https://open.spotify.com/show/7dCctfyI9bODGDaFnjfKhg LEARN MORE Learn more about Jessica and her music here  👉 https://www.theroyalsackbutcollective.com/ Follow Jessica on Instagram here  👉 https://www.instagram.com/jessbullanderson/ https://www.instagram.com/jessbullanderson.art/ https://www.instagram.com/jessbullanderson.music/ Download my balance app 👉 https://www.balance-menopause.com/balance-app/Get tickets for my new theatre tour, Breaking the Cycle 👉 https://www.nlp-ltd.com/dr-louise-newson-breaking-the-cycle/ 

I've got Jess, my oldest daughter on my podcast today. It's quite an emotional podcast because we're talking about living with a chronic disease. We talk about migraine. We talk about PMDD. We talk about side effects of other medication that may or may not help a disorder and how she's really built up and transformed her life by making lots and lots of different adjustments. But also, sadly, some of the treatments that haven't helped her and some of the ways doctors have spoken to her as well.

So there's a lot to listen to in this podcast. It's quite sensitive, but it's a really important conversation. So Jessica, you're here in real life. Yeah. Last time we did it remotely, your podcast. We did. And you had long hair. Yes.

And you might or might not been taking hormones. I can't quite remember. I think I was taking estrogen. So I was talking to someone this morning, actually, I've not met before. And I was telling her a bit of. about you and I hope you don't want me saying you have like the cleanest life ever and it's got better and better in that you've never been bad but you're really really you don't drink alcohol you don't eat processed foods your natural fibers everything but you've had to be like

this because of your migraines yeah and I always feel a bit guilty because I migraine is an inherited condition that I have given you I've given you lots of love but I also give a new migraine And I was telling her about the year that you had, which we don't really want to talk about because it was horrendous, but you have been medicalised and given medication, so many medications by different neurologists, different specialties, different, like you've had different neurologists that you've seen, you've had different chest consultants that you've seen, you've seen different GPs, you've had different types of medications, you've seen different gyps, you've had different types of medications, They've been different doses. Some of them have been given in an off-label, dose off-license use. Shock. Yeah. And you've also had hormones.

You still have migraines. You're wearing your glasses because the light in here is, could trigger a migraine. So you're always really sensitive. But out of all the medicines that you've tried over the last five years, which ones have made the best difference to your life? Well, obviously, HRT is, well, I feel like we might need to give some background to the people listening to the podcast. Obviously, always have migraine. It's a genetic neurological disorder, as you said, is from you. Like Sophie sometimes gets migraine.

And I have my migraine my whole life and it gradually got worse and worse until like when I was 16 started taking. medication to try and prevent migraine. And then it was just constantly snowballing and it led to, well, in lockdown, just being bedbound for weeks and weeks with just terrible migraines. And trialing loads of different medications and seeing the top neurologist in Manchester, because that's where my school was. And the neurologist just said, this is your quality of life and you need to accept it. And then came to London, just got worse and worse and worse, had things like medication, overuse, headache, was told I couldn't be helped. And then I met a neurologist who was amazing and has changed my life.

As you know, it took a couple years and when we met him, he took an amazingly detailed history and said, I will be able to sort you, it will take time. We need to unravel everything. During that process, had really severe memory loss when I lost access to my short time and my long-term memory and couldn't do anything. I'm a trombonist. I couldn't read music. I had to enter up my studies. I couldn't paint. And then at that time, I was having like 21, I think, cranial nerve block injections every week for months. And I had that and I also had a treatment in hospital which reset all of the pain pathways in my brain. And I made all of the lifestyle changes that I could possibly make for migraine. And I was really interested in things like Alexander Technique and NLP neurolinguistic programming and rewiring my brain.

and how can I elevate myself and how can I make the 1% gains to feel better and a combination of all the holistic treatments as well as all like the amazing work that my neurologist has done has led to now me being able to have this quality of life which is the best has ever been and I never fathom that I would be able to live

in the way I do now and during that time with memory loss and trialling loads of different medications and some being off-licensed, not that that matters, and some being licensed and being given things like antipsychotic medication because that's meant to help for migraine batchy.

It didn't help, and we didn't know that, but it's just terrible medication side effects. Taking HRT, which you noticed that during lockdown when I started getting really ill, was originally you just took it because every month you realize that I was really depressed for like three, four days. And I wasn't even aware of my cycle at the time because my periods were so heavy because my periods were so heavy, so I had a coil, so I didn't have any bleeding.

And we noticed that it was my cycle started taking estrogen. All of a sudden, I didn't feel this flatness. But also I wasn't getting migraines that were triggered by hormonal fluctuations, which was life-changing. and when I was really ill and in so much pain a few years down the line, I know if I hadn't had the HRT at the time and I had those fluctuations, I wouldn't be here today. So I was, people can't comprehend, obviously you know, but people can't comprehend how ill I was.

So I was taking estrogen and now I take testosterone and progesterone too and it's changed my life. I was talking to this man that I met yesterday, an 80-year-old man, and I was, you know, saying, what's your mom do for work? And I said, you know, she's in menopause, specialist, and GP. And he sort of freaked, and I said, oh, it's not really to do menopause. Menopause is a long-term hormone deficiency. It's to do with hormonal imbalances.

And that happens throughout, you know, your whole lifespan. It's not just at the end of your life. And all of a sudden, like, this man just got it. and he was so on board with what I was saying. And yeah. So HRT has been like obviously incredible for me. Yeah. And I don't want to get emotional

because it's been a really hard journey for everybody in the family. And I think, you know, with a lot of my work, you know the pushbacks that I get. And I think it's so important for people to understand your story and other people's story because holistic medicine is so important. we have to look at everything. And with migraine, there are so many different triggers.

I have migraine, but not nearly as bad as you. And it's trying to unpick absolutely everything. We do it all the time with our patients as well. And hormonal changes is one part of it. And I still feel guilty because a while ago, before I understood as much as I do know about hormones, someone did prescribe for you a synthetic progesteran to try and help with your bleeding.

And I remember walking down Baker Street in London and your skin was terrible. Do you remember? Your mood was very flat. And you said to me, I think it's a congested and I said, oh, I don't think it is because I didn't know how else to help you at the time. And looking back, that was totally the wrong thing for you to have a synthetic hormone in your body. But, you know, when people are really ill, you do clutch at straws.

And I've really tried to be your mum, not your doctor. and I've sat in so many consultations with you and listened to different consultation style. And when that doctor in Manchester said, that's just the way that you're going to be, and he offered you a drug called Teperamate, which suits some people, but it does cause a lot of side effects.

And we were trying to ask about having Botox, which you have as well regularly. And he said, no, because you have to fail three medications before you can have... I know. And it's crazy, these guys, because, for example, yeah, it's like fails three medications at the highest possible dose you can tolerate. So it's at sixth form. It's at music specialist, sixth form.

Like, it was really intense. And I remember I was trying to stomach the highest possible dose I could have of, of propanol, which is beta blocker. And I'm incredibly, we've found out, obviously, I'm really sensitive to medication. So I don't take a daily medication out other than HRT. And I was going to perform and I just thought I don't feel excited. I don't like music. I don't understand what's happening to me. And I spoke to you and you said,

oh yeah, didn't you realize that you're not going to feel any psychological effects of anxiety? I was like, no, because I was just prescribed this. I was told this is for migraine. It's not going to, you know, and when I was trying to stomach a really high dose of candor started and I was just the... Fainting. It was just so bad. And this is a mild medication compared to some.

So Candlestartin is a blood pressure lowering treatment. It's not licensed for migraine, but off-license. We know it can help some people for prophylaxis. It's mentioned in guidelines. But no one ever told you the potential side effects of these medications. You were given them in good faith, which is fine. But it just surprises me that no one sat down and said, but you might have this side of fate.

You might have that. Just look out for this. So when you were feeling flattering your mood on the propanol, you thought it could have been anything or you were depressed. and there are lots of times that you have been very low in your mood but giving you antidepressants would not have been the right thing I remember when you were assessed by a psychologist in Queen Square and they were saying that you might have depression

well of course because you couldn't function or yeah I was diagnosed with severe depression because like I couldn't you know is at the point of do I piss myself or do I get out of bed because I'm in so much pain I actually don't think I can walk to go to the bathroom you know it's not it's not light stuff no and your

migraines just wouldn't lift and wouldn't improve and you had many times where they were so bad but we're not dwelling on that because they're so much better but it's the way that you know I I spend a lot of time in consultations with patients and I'm really honest

with them and I'll always say look I'm not sure how I can help you or I've done as much as I can but I'd like you to see someone else for a opinion but that was never offered, it was very much this is the way you're going to be now. And if we'd listen to a few of the doctors years ago, I can't even imagine what would have happened. But when you did see the doctor that you're under now in Queen Square, and just to having time where he'd listened to you. And I remember coming away and thinking, well, he actually understands. And it's not a

quick fix. And I think that's the same with any chronic condition. And obviously, my brain is a chronic condition. And also realizing, you know, all the lifestyle changes that's going to take at least three months for you to basically feel any benefit and all these kinds of things and at the time when you're so ill you know and people would say to me oh maybe maybe you should just drink more water and you think fuck off like you don't know what i've gone through this is actually ridiculous and now that i'm more balanced day to day and most of my time is pain free and i occasionally have migraine I realise, obviously, yeah, it's really beneficial that you drink, you know, so many, you know how I was saying about this book I read the other day

and loads of people chronically dehydrated. But it's just as all these tiny little things all come together and all these 1% gains, which you can do. But then also thinking about all the people with hormonal issues, which are diagnosed not as hormonal issues. And you think almost all the incremental gains and benefits in your body, from having the right hormones for your body so it's a minefield it's really and then thinking about people not being listened to by their doctors or having good bedside manner like I was

telling you about my friend the other day who their gynecologist just said well have you ever considered that maybe you just have painful periods and that's just how it is you think it's awful it's an uphill battle and you know you've been exposed to the medical system a lot earlier than a lot of people have. But I just wanted to, I know we've talked before about PMDD, premencered disorder, but it is important because I see a lot of people who are your age, you know, you're 22,

but your age in early 20s. And it's always dismissed, oh, you will feel a bit bad, it's just before your period. So you're just going to have a bad few days. But what really resonated with me, and I know a lot of people when I talk about it, is when you told me it's those three days you didn't want to pick up your trombone,

You didn't want to join in when we were in COVID, like just household meals, you just felt really flat and joyless. But it was when you said to me, but it's the rest of the days where you're dreading those days coming. And also that, you know, if we're just thinking about trombone playing, if you don't, it's very physical instrument. If I don't play for three days, it would take at least three days to get my playing back to the stand that it was

before those three days even happens. So then you've lost so much more time. And then also you've got. that with skills and not continuing doing work that I do enjoy doing, but in those three days, you think, oh my God, do I want to quit music? Do I just hate everything that's in my life? And it's obviously not to do with that. And then when you come out of that, you look back and you think, why did I feel that bad? Maybe there is something deep rooted. Maybe I don't like music. And actually it's not to do with that. It's maybe your estrogen was a bit low. Yeah. So it's not just those three days where you're suffering, is it? no and there's all the psychological reflection on it and it's always it's the same you know when you say if I have a migraine and how it impacts your brain with these diagonal waveforms which can cause like depression and anxiety well they do cause depression and anxiety in the moment

and you always say don't think about it when you have a migraine let's talk about it tomorrow if you're still worried about this and it always comes to tomorrow and it's oh yeah that was a migraine thought that wasn't me but when you're when that was happening every month you think, oh, maybe that is me. Yeah, and I know I've seen quite a few of your friends as patients who have suffered as well because they've been more open with you, talking to you, or you've picked it up on them because they're maybe not coming to rehearsals or they're having symptoms in a cyclical way. Now it's great that discussions are really open, especially my generation.

People say, oh, I'm struggling with this and I feel this way. And I wonder the discussions when I'm not there, people go, yeah, I feel that way too. It's shit. and it's this kind of solidarity thing. But when I'm there, I'm like, oh, did you know that it actually doesn't need to be like this? And people, you know, and I say, I feel the same every single day.

I don't have these dips. My mood is the same. I feel the same person. My, like, identity and sense of self, minus when I have migraine is really secure. And people don't realize. Is that surprised people when you say that? Yeah.

Everyone is always shocked. Because so many people have hormonal changes. so many people have hormonal fluctuations. But it's been normalized. Yeah, completely. So when I say, oh, there is actually a solution you don't need to feel this way. Everyone's really shocked.

And then the whole thing is also, I'm there for those discussions. Obviously, you know, my friends can, they know where to go for help, but what about all the people that can't go anywhere for help? You know, all the people that don't know that there's solutions and you just have to deal with the pain or whatever it is that, you know, bowel issues

or like vaginal dryness, that's a big thing. And people just taught you have to deal with it. It's not fair, is it? No. As our hormones change throughout our lives, especially during perimenopause and menopause, looking after our bones, muscles and balance becomes even more important.

That's why I love Vivo Barefoot. Their shoes are designed to let your feet move more naturally, helping you build strength and stability from the ground up, that natural movement can support not just your physical health, but your sense of well-being too. Vivo Barefoot are so confident you'll feel the difference that they offer a 100-day trial with a full money-back guarantee, so you can try them completely risk-free. And as a listener of this podcast, you get 20% off your first order with the code, Newsom 20. Just head to vivo barefoot.com and give them a try. Your body will thank you.

I'm really thrilled to share with you that I'm doing my UK theatre tour next year. It starts the 14th of April and goes on for two months. I'm coming to lots of places all over the UK and I'm going to be talking a lot about hormones, a lot about the history, what's happened and what's gone wrong for so many women and how we can change this. It's going to be uplifting. It's going to be sad. It's going to be happy. And there's a lot of opportunity to ask questions as well. I'm just so excited about meeting so many of you. So head to the show notes and you can book tickets. So when you say to people that you're taking hormones, are they surprised when you're young? I really, I actually really like the reaction from guys when I say, oh yeah, I take estrogen and testosterone and

gesturone. They go, what? You take testosterone? I go, oh yeah, like I probably have, you know, equal to or more testosterone in my body now than you do as a man. And as a man, you've got estrogen in your body and it's been producing the brain. And they just, it sort of blows their minds open. Yeah, people are really shocked by it and then they're really intrigued and they're really curious and they often go oh yeah i know someone that could benefit from that i know someone that feels oh i had no idea that these were linked but if you tell people what you were taking hormones in contraceptive pill they wouldn't no no even though they're synthetic so that it's it's it's not the hormones it's a synthetic version of the hormones it's not the same as the hormone itself

yeah it's interesting isn't it because all you're doing is is topping up what your body wasn't wasn't producing and you have a hormonal coil in which is probably stopping you ovulate and stopping your own natural hormones as well because it's a synthetic because it's synthetic so all you're doing is having a very low dose which is really helping but you were using estrogen through the skin the estradi patches but when the weather was hot god that was terrible that was so that was so bad because the patches weren't sticking and I didn't realize that it was the glue the eustodils in so that's how it's absorbed and I was just yeah I was just feeling terrible like I was getting this vaginal dryness I was getting I was getting loads of ingrown

hairs I never get ingrained hairs I don't I don't even shave my legs and I was like my body just wasn't happy it's getting ingrained hairs like my eyes were dry I was feeling way more anxious I thought maybe I was worried about at the time I was in Basel, like, doing sackbutt playing, which is a historical chombone for those I don't know. And it was a really exciting thing. And I was just, I was just really overwhelmed. And we even, do you remember, we had to,

I had to change a date so I was going to Basel because my, yeah, I forget about this. My migraine was so bad. And we didn't know why my migraine was so bad and it was so stressful because it was the worst it had been in years. I remember Daddy had to come to London and look after me. And it was just because my patches weren't sticking. Because I remember asking you about physical symptoms

because you were getting palpitations as well, won't you? So many heart palpitations. And I hadn't had them, had heart palpitations when I was in sixth form when I wasn't taking HRT. So you had palpitations, you had vaginal dryness and cystitis. I was having like 20 heart palpitations. Yeah, cystus. That was terrible. So you used vaginal hormones as well, don't you?

My tinnitus was worse. Yeah. Yeah. You know? Yeah, sorry. Yeah, I use pezzaries. They're great. Which, as I've just done a podcast earlier, which is coming out with a urologist, who's great.

And we were talking a lot about vaginal hormones, how younger people can use them as well, especially when it comes to cystitis and neurony symptoms and frequency as well. But the thing is in medicine, if we don't ask the questions as doctors, we don't get the answers. So I could have, if I was a pure migraine specialist, I would have just concentrated on your migraines that got worse. that time when you had to cancel that trip. But I'm not. I think about everything all the time. So asking those specific questions about your palpitations, your other physical symptoms

puts together. So then you change preparation. Yeah, because I was having joint pain. Yeah, yeah. It was actually kind of crazy, wasn't it? But I think you can see how people can gaslight themselves as well. Yeah. They think it's their fault or they think there's something else going on and don't.

So then if they're not. not telling the doctors, the doctors don't always pick up all the symptoms. And that's why it's really important that doctors and clinicians are really, really well trained so they can ask the right questions. Also, it's hard to know everything that you need to remember to say to a clinician and also everything which is relevant to a clinician. Because, you know, obviously you or daddy come to my appointments because you're able to talk in like medical jargon and sometimes I'll be there and I'll, you know,

and I'll say, okay, so I've had this, this, this, this. And you do it less than daddy, but daddy will go, oh, you don't need to tell them that, that's not relevant. But this thing is really relevant that you just said. Obviously, as a layperson, I don't know what's relevant. And if you don't have a medic that's sat by your side saying, oh, actually, she forgot to tell you that this also happened. So one of the drugs that you were given was an inhaler,

and it's very similar to something called oxybutinant, which is an anti-musculinic treatment, that some of the guidelines say can be given to women as a treatment for hot flushes because it can help sometimes with hot flushes but when you had it it caused lots of symptoms

do you remember? Well that was when I started taking preseries because I all of a sudden had like such bad vaginal dryness I could barely walk and it was terrible it was so bad

but you also you're you're you're you're you couldn't read very well Do you remember you were saying? Yeah, and I had all these like black spots in the corner of my vision. It felt like I felt so on edge because it felt like there was just something behind me that I couldn't quite see. And your skin was really dry as well. Yeah, that was terrible.

And then my lips weren't good and my lips were splitting. And then that was terrible for playing trombone. And then I was more prone to getting spots around here as well. And then obviously that was really, it was awful. So I'm sort of bringing that up not to give you trauma. But what I was thinking was when you, when we realized that it was the inhaler that was similar to the oxibutinin and that you have all these anti-muscular and its side effects and you stopped and you started to feel a lot better, I remember a few weeks later

saying to you, do you know what, that's a medication that people use as a non-hormonal treatment. I know, and I remember I just started crying. I know, you burst into tears thinking about the women. Yeah. And this is where I have an issue. So I don't mind if people take hormones or not. but what I feel really sad is these non-hormonal treatments that are given to women to try and maybe help a hot flash

because there isn't very good evidence that they work for other symptoms and they don't work for the health benefits. So women are given them, like you've been given drugs in good faith from doctors, but they're not talking about the side effects. But the side effects are often worse than the symptom that they're trying to treat. And, you know, you are sensitive medication. Not everyone on oxibutin is going to have those symptoms, but oxibutin is also associated with an increased risk of dementia

and your memory was going as well when you were taking that inhaler because we were worried there was something else going on. So the power of these other drugs I think just can't be underestimated. I know. So you also had alanzapine,

which is an antipsychotic medication. So it's used a lot for people with psychosis, very severe depression it's sometimes used. And I see a lot of women who have been misdiagnosed with a mental health condition when it's related to their hormones. And a lot of those people are given antipsychotic medication. And we know that they have different side effects,

but a lot of people experience side effects with them. And it didn't help you, did it? It was given to me in good faith and that it could help. And I don't, you know, I'm completely fine that it was prescribed me and I tried it and it didn't work. And I think, you know, for some people, that will be the medication and that helps them. that's great, but people also don't know and they're not being told and doctors maybe

aren't aware or aren't aware that, oh, also this could help. So maybe also try this medication see what you prefer. Like maybe it's a combination. It just is really sad to think that there are so many people that don't know the quality of life that they could have. And I think this is where, like us knowing that the side effects are related to a drug, but a lot of people think it's part of their condition. So they're living with side effects of a drug that they might not need to have.

And some of our data shows that when we give hormones and add in testosterone, we can deprescribe to it. We can reduce the prescribing of antidepressants, antipsychotics, some of the other painkillers and drugs as well. And it's always a balance. and we're always like trying to look at optimising treatment for our patients. But sometimes when you're on a medication, that's it. You just carry on with it.

And that's a real problem. I know. So you also play the trombone in all sorts of groups, all sorts of orchestras, all sorts of people. And you're often like saying to me, mommy, this person is so obviously menopausal, especially when you're with older people. And it's one of those things once you see it, it's hard to unsee. But like you're really young. and you're still seeing the suffering that's going on all the time.

Do you think in your mind that things are going to change? Yeah. Do you? Well, yeah, I think. Do you think there's a difference in your generation of people, like your friends, once you educate them, talk to them? Are they thinking differently? Yeah, once I talk to them about things,

then, you know, obviously they can look at balance and, like, loads of free resources online, mind, then, like, it changes their life and then they're always talking about it. And it's, I was, I don't know if I was saying it to Sophie the other day, but people often ask me when I see them, they go, oh, how's your mum? Like, that's the first thing they ask before going, how's your partner? They go, how's your mum? How's your dad? Oh, how's Alex? You know, people are really interested in the work that you're doing and how it can positively impact them. their life so I hope it will it will change and shift but I think one of the sort of scary things is

when people are aware of you know maybe someone's okay talking about the menopause and they don't see it as a taboo and they think yeah we need we need to talk about the menopause it's important to have awareness there that's great um but then it stops at the awareness and there's no not enough is it they don't they don't know about treatment or they've been told don't go near HRT or all this kind of stuff and that's really sad or people say oh yeah I'm I'm through it now so I don't you know I wouldn't benefit my HRT anyway and you think well even if you you just look at preventing Alzheimer's you know yeah I was you've we I'm not you can talk to other people about this this but I just think it's really important to push a conversation further to be like this doesn't need to be an issue this just needs to be you know

in the same way you know how you always use the example of your thyroid isn't working here's some thyroxin great it's not this whole oh we need to talk about like all the issues around if it should be easier yeah it should be simpler because as you say it is simple

it's very simple yeah for the vast majority of people people. Yeah. And even when it's not simple and it's more nuanced and complicated, you know, as a esteemed medical person, like, you have the expertise and training and, you know, clinical practice to be able to help people in a nuanced way. But I, yeah, so I just think that's, yeah, it's really sad. It is sad because there is a simple solution for a problem that's affecting every woman. So we've talked a lot. There's been a lot of medical jobs. And there's been lots of things, but I know there will be people listening who have chronic diseases.

There will be people listening with migraines, maybe fibromyalgia, chronic pain. So I just want three take-home tips from you. You are really good advocate for yourself. You're a really good advocate for your future health. But it's not easy and you've worked really hard at it. And, you know, the proof is in the pudding and it takes time and patience. Every little adjustment, every little your treatment lifestyle you've had to wait. So people that are maybe listening

It was alright for her she looks great She feels great We've been really open that it hasn't been easy Not just for you but for us as a family So what three things do you think People listening could think right This is what's going to help What would you suggest people to do

If they've got a chronic disease And they feel that they're not getting To the place that they want to Well that's really hard And I think a big thing is people are not being listened to and you talk about you know people being medically gaslit

and told oh it can't be that bad or oh you've got this one really big bad symptoms so we're not going to talk about all the other symptoms and you know it's the same when I was really ill and people were like oh you can't be that ill and it's you know people don't know so I think you know being listened to is a really big thing

or finding someone that can listen to you and being validated in how you're feeling because it's like it's rubbish yeah it's real it's real and it's rubbish so so I think that's probably the main thing I don't know

because when I was really ill everyone just said oh you need to you know you're going to be so resilient this is great like this is character building I just think I don't want to be resilient because I don't want to be ill, you know? So I feel like giving advice to people saying, I'll be resilient, that's not the advice I wanted to hear

when I was, like, ill, you know. But I remember one time I said to, like, my dad, you know, if you don't know what to say, like, just give me a hug. And I think that's, having that connection with people is really important. Because when you're ill, your community just goes sometimes. You can't get upset. A tear hasn't been shed, so, yeah.

So, but yeah, so being listened to. Being listened to, having community. Yeah. And for other people, like, coming to that person for that community. Yeah. Yeah, knowing that, like, nothing is permanent and states can, shift even if you feel so stuck in the moment and sometimes the present moment feels so drawn out and you think this actually isn't going to change but it will but it will and it's so and it's so

incremental and small and then you look back and you go oh I was there and now I'm here and that's so important and yeah and you have to realize the value in like even the smallest things yeah like coming here and the lights being triggering but actually my head's clear and I've got my special glasses, but I've got my special glasses on and it's fine and I'm able to manage and like I feel great and the rest of my day is really exciting and go to a talk and going to a gig and but a couple years ago I wouldn't have even been able to walk in this building so looking at progress I wouldn't be able to travel to even get here you just I know it's amazing but I think that it's so important yeah whatever that is absolutely and you need to work with people who

understand that progress and can encourage and support so I know it's It's been quite emotional, but I'm really grateful because I know what you're saying and the strength that you have as a 22-year-old is quite formidable. So thank you for coming on to the podcast. You're welcome. Oh, thank you. You're right. Yeah, you are.

It's a lot. Well done.