Chronically Jenni

06/10/2026

It’s Dysautonomia Awareness Month, but what actually is dysautonomia?

Well it’s not just one condition. It's an umbrella term for a group of conditions where the autonomic nervous system doesn't function as expected.

That's the part of your nervous system responsible for all the things your body is supposed to do automatically, like regulating your heart rate, blood pressure, digestion, body temperature, sweating, bladder function and even your pupils.

Dysfunction in the autonomic nervous system can cause a variety of symptoms including dizziness and fainting, abnormal heart rates and blood pressure, blood pooling, nausea, digestive problems, problems regulating your temperature, fatigue, sweating abnormalities and lots more.

Dysautonomia isn't rare either. Dysautonomia International estimates that more than 70 million people worldwide live with some form of it.

There are lots of different forms of dysautonomia. One is POTS, which is the type I have, where being upright causes an excessive increase in heart rate, alongside symptoms like dizziness, breathlessness, fatigue and sometimes fainting.

There’s also neurocardiogenic syncope, sometimes called vasovagal syncope, where the body can respond inappropriately to triggers, causing blood pressure and sometimes heart rate to drop, which can lead to fainting. And at the other end of the spectrum is Multiple System Atrophy, or MSA, a rare neurodegenerative condition that causes widespread autonomic dysfunction and can be fatal.

Dysautonomia can occur on its own, or secondary to other conditions, including diabetes, Parkinson's, lupus, MS, rheumatoid arthritis, EDS and more. It can also develop following infections. And since the COVID-19 pandemic, there’s been much more awareness of post-viral dysautonomia, because some people with Long COVID develop types of dysautonomia.

There isn't currently a cure for dysautonomia, but depending on the type and cause, symptoms can sometimes be managed with medication, lifestyle changes and treatment of underlying conditions.

What do you wish more people understood about dysautonomia? Let me know in the comments.

05/10/2026

October is National Disability Employment Awareness Month, so let’s talk about one of the contradictions disabled people keep being faced with.

We’re repeatedly told that more sick and disabled people need to be supported into work.

Then the conversation turns to benefits, as though taking financial support away will somehow make disability disappear. Except PIP isn’t an unemployment benefit. It helps with the extra costs of living with a disability or long-term health condition, and you can receive it whether you work or not.

So why aren’t more disabled people working?

Maybe because some workplaces are still physically inaccessible. Maybe because flexible and remote working can be essential access needs, but are still treated as perks, maybe because disabled applicants have to think about whether disclosing their disability will affect how they’re perceived. Maybe because getting the equipment, support or adjustments needed to work can take far too long.

The Government itself has acknowledged a backlog in Access to Work, a programme specifically designed to help disabled people start or stay in employment. And maybe because some disabled people who are already working are fighting to keep the support that makes their jobs possible.

The Government is currently investing in programmes intended to help more disabled people and people with health conditions enter and remain in work. But employment policy cannot just focus on getting disabled people into jobs. We also need accessible workplaces, flexible opportunities and reliable support that enables people to stay in them.

We don’t have a shortage of disabled people who want to work, we have far too many barriers standing between them and accessible, sustainable employment and that’s exactly the point.

What barriers do you think are still stopping disabled people from getting into, or staying in, work? Let me know in the comments, and share this with someone who needs to understand why accessibility and support matter.

04/10/2026

It’s finally here, our full wedding film.

So many of you have followed our journey for years, from early lockdown dates, buying our home, welcoming our pets, through our engagement, wedding planning and everything that came with it, so it only felt right to share our wedding day with you too.

Huge thank you to Itchy Eye Productions for capturing our special day!

It’s finally here, our full wedding film.So many of you have foll...

02/10/2026

ASOS has just launched its first adaptive range, so obviously I had to give it a try.

I spoke at ASOS first Disability Pride Event 2 years ago & I knew adaptive pieces were in the works back then so I was really excited to see adaptive fashion reaching this major online retailer, especially pieces that feel fashionable rather than just basics. After trying everything on, I think there are some clever ideas here but definitely areas where the designs could go further. We have 5 pieces from the collection to try (ad-gifted)

First up, the brown suit.

The trousers have pull loops and a zip at the lower leg which gives access up to around the calf, potentially useful for prosthetics. They’re really comfortable and sit nicely when seated, although as a wheelchair user I wish the pockets were more secure because things can easily fall out of standard side pockets.

The cropped jacket was probably one of my favourites. It has a magnetic opening, shoulder pads and shorter sleeves, which are much easier when self-propelling a wheelchair.

The matching waistcoat has elasticated sides, magnetic buttons that look like standard buttons, and an opening that could provide access for tubes or medical devices. I love the idea, although the magnetic fastening didn’t work particularly well for my bigger chest even in my usual size.

Then I tried the dresses.

I LOVE seeing sparkle, patterns and different fabrics appearing in adaptive collections. Both dresses have features designed with medical devices in mind, including tube access in both and a hidden pocket in the waist of the blue dress. But neither was noticeably easier for me to actually get on and off than a non-adaptive dress, which feels like a missed opportunity.

Overall, I’m genuinely really pleased to see a major brand investing in adaptive fashion. There are some great ideas in this collection, but I’d love to see future pieces take accessibility even further, particularly around independent dressing and the needs of seated wheelchair users.

Which piece was your favourite? What features would you want ASOS to add next? Let me know in the comments!

01/10/2026

October is National Disability Employment Awareness Month, so here’s something I think everyone really needs to be aware of.

The Government says it wants more disabled people in work & wants to remove the barriers that stop us working. Access to Work is a government scheme that exists to help disabled people start or stay in work. Yet many of us are having to fight just to keep the support that makes working possible.

It's been a month since my Access to Work support was cut by around 85%. We immediately asked for the decision to be reconsidered. Since then, I’ve received one text confirming they would look at my case again and that I didn’t need to contact them. That’s it.

My MP wrote to the DWP on 8/9. We’ve heard nothing since. The BBC has also contacted the DWP on my behalf & this Saturday I’ll be speaking on Radio 4’s Money Box about Access to Work failures.

Meanwhile, the consequences haven’t been put on pause.

We’ve lost a member of my team. I’m personally paying to top up both the hours and hourly rate of the support I still have, but I cannot afford to replace everything that was taken away. I’ve had to turn down work, lost income & I don’t know how I’ll find enough support to fulfil some existing contracts.

The stress and upheaval have also made me significantly more unwell, physically and mentally, and my capacity to work has plummeted.

A couple of weeks ago I won the National Diversity Award for Positive Role Model for Disability. My husband had to take time off work to bring me because I no longer had enough funded support hours for someone else to support me to go.

Since speaking publicly, I’ve heard from disabled people waiting months or even years for support, people whose support has been cut and reconsiderations left unanswered, and others who have quietly left work because they cannot keep fighting.

For me, one month of waiting has meant losing a team member, work and income, spending more of my own money on support, becoming more unwell, and still having no idea what happens next.

Support isn’t a bonus or a nice extra. It is what makes working possible. It is Access to Work.

30/09/2026

I am absolutely in love with this adaptive dress from Intotum Fashion , so I wanted to show you all the features that make it so clever, wearable and comfortable.

First up, it’s made from this super soft and stretchy jersey fabric which feels honestly buttery soft. It’s also sensory-friendly, label-free and designed to be gentle on the skin.

It is a one-piece dress, but the top and skirt wrap separately, so you can adjust them independently and access exactly where you need to. That can be really helpful if you have a stoma, tubes, a chest port, catheter or other medical devices, and the wrap design can also adapt more easily to things like bloating or weight fluctuations.

There’s Velcro at the waist on both sides, and the back waistband is elasticated too, which gives it a really flexible fit whether you’re sitting or standing.

But one of my favourite features, especially as a wheelchair user, is the concealed side zip in the skirt. It means you can open the skirt up completely, have it laid out in your chair, transfer onto it, and then get dressed much more easily.

And then there are these little internal popper straps which let you lift the skirt up and secure it out of the way when you’re going to the toilet. Honestly, I think every dress should have these.

The sleeves are elasticated too, so they stay in place without feeling restrictive.

It’s really comfy but still feels smart, so you could easily dress it up for an occasion or keep it really relaxed for everyday wear.

Now you’ve seen all the features, I’d love to know what you think. Would this adaptive dress work for you?

Remember, you can use code Jenni10 to get 10% off at Intotum (ad-affiliate)

30/09/2026

2019 vs 2026. Same awards. Very different life.

In 2019, I had just graduated university. I was working at the cinema, applying for jobs & had absolutely no idea what I was going to do with my life because so much had changed in the 3 years since I'd been diagnosed with my chronic health conditions. The future felt scary & uncertain. Chronically Jenni existed, but it wasn’t a career, I didn't know it could be. Earlier that year I’d been celebrating reaching 1k subscribers on YouTube, and I was still figuring out what this little corner of the internet could even become. I barely had 3k followers across platforms.

Somehow, I was shortlisted for the National Diversity Awards Positive Role Model for Disability award from more than 28,500 nominees. I went to Liverpool with my mum because my boyfriend at the time wasn’t particularly bothered about coming and just being in that room felt like a massive achievement. I didn't win that night but it was the first time something to do with my disability was being celebrated & the first time I felt confident and proud using my mobility aid.

Fast forward 7 years.

Chronically Jenni isn’t the thing I do on the side anymore. I had a couple of other jobs in the interim but, eventually, it became what came next.

It became my career & a community of now over 400k people across platforms! This year, the National Diversity Awards received over 85k nominees & I was once again shortlisted from those incredible people. This time, I had my husband beside me, taking time off work to make sure I could actually be there, something I could never have imagined years before. And, to top it off, this time, I came home with the award.

There has been so much life between these two photos. So many incredible opportunities, so many difficult periods, and unfathomable growth I don't give myself enough credit for, and a 2019 version of me who had no idea where any of this was going. I think that’s the bit that gets me most. I thought I was trying to work out what I was going to do with my life. Turns out, I’d already started building it.

I'd love to hear about a positive change you don't give yourself enough credit for in the comments!

23/09/2026

What you see vs what you don't see.

There's a common assumption that if someone can get dressed up, go out, smile, work or enjoy themselves, they can't possibly be that disabled or unwell; but what you're seeing is often such a tiny fraction of our lives.

You might see us smiling in photos, celebrating achievements, spending time with loved ones or doing things that seem completely ordinary. What you don't see is everything it took to get there, what we're dealing with in that moment or the days, weeks or even months it might take us to recover afterwards.

Many of us have become so accustomed to masking our symptoms that we don't even realise we're doing it. We smile through pain, push through exhaustion & use every bit of energy we have to participate in things that other people can do easily & often we're struggling far more than anyone realises.

I've spent the last eight weeks struggling to keep my head above water and while I've been receiving so much lovely praise & recognition for my work, behind the scenes I've been struggling to even do the basics.

These photos were taken on a night when I won a National Diversity Award, something I'm incredibly proud of. But behind the smiles, I was exhausted, burnt out, battling a migraine that painkillers weren't touching and trying to get through the evening without the support I really needed.

Being able to do something doesn't mean it was easy, that we could do it again tomorrow or that we didn't pay a significant price for it afterwards.

And being able to enjoy ourselves doesn't make our disabilities any less real or our support needs any less significant.

We shouldn't have to spend our lives at home, miss out on the things we love or look visibly unwell every moment of every day for people to believe we're disabled & need support.

Please don't mistake the moments you see for the whole story, please remember there's often so much more happening behind the scenes than you'll ever see.

If you've ever been told you can't be that disabled or unwell because someone saw you out enjoying yourself, I'd love to hear your experiences in the comments.

21/09/2026

I was not expecting to win the National Diversity Award for Positive Role Model for Disability, so when I got up on stage, in a lot of pain and unprepared, I just spoke from the heart.

Here’s what I said:

“This is really surreal. I was actually nominated for this award back in 2019, so to anyone who doesn’t get the award tonight, keep dreaming, keep working, keep hoping. And yeah, this is wild.

But it’s also really bittersweet because this week I’ve won an award for my work educating people about disability and championing disability, at the same time the government has cut the support I get to be able to do my job.

We need changes, and we need allies so badly, so that this doesn’t happen quietly to the people who aren’t able to fight.

The disabled community is absolutely incredible, so go and follow all the nominees tonight, and make sure that you’re aware of them and the work they’re doing. Congratulations to everyone.

A huge thank you to my support team, who I wouldn’t be here without, and I’m already feeling the loss of some of those members. And also a big thank you to my husband. I love you. Thank you.”

There are so many incredible disabled people doing important work, often while having to fight the very systems that are supposed to enable us to participate.

Please seek out the other nominees across the awards but from my category in particular who are doing incredible work: .BethX and more. Follow their work, listen to disabled people and, importantly, be an ally when our rights, support and ability to work are under threat.

Recognition is meaningful. But what we need alongside recognition is change.