'My Experience as a Content Creator with Chronic Illness' by Jessica Mather (she/her)

This is a bit of a strange piece to be writing, if I'm honest, because I never intended to become a content creator.

Let me start at the beginning. In 2024, I started experiencing a myriad of unusual symptoms. Like many of us, my diagnosis journey was long, frustrating and, at times, completely exhausting. I won't bore you with every appointment and referral, but after months of searching for answers, I was formally diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTS) at the end of 2024, alongside informal diagnoses of hypermobile Ehlers-Danlos syndrome (hEDS) and Mast Cell Activation Syndrome (MCAS). Then, in 2026, I was diagnosed with severe ADHD and have since been navigating the possibility of PMDD.

Although I finally had names for what was happening to my body, I didn't leave those appointments feeling like I had many answers. I certainly didn't leave with a roadmap. Instead, I was handed some salt tablets, advised to drink electrolytes and sent on my way, having chosen not to take medication for my PoTS. I remember thinking, is that it?

Like so many people with chronic illnesses, I went looking for answers myself. I disappeared down the rabbit hole of Facebook support groups, research papers, podcasts, Instagram pages and anything else I could find that might help me make sense of what was happening. Somewhere amongst all of that, I came across my coach. That moment completely changed the trajectory of my journey.

Since then, we've been working together to improve my symptoms through lifestyle changes. She has helped me build a way of eating that supports my conditions, guided me through supplements, designed a gym programme that works with my body rather than against it, and has been by my side through every setback and every small victory. It hasn't been a quick fix - those don't exist - but it has shown me that there was far more hope than I had been led to believe.

Fast forward to creating my Instagram account. The funny thing is, I never intended for anyone to really see it. I wanted a space that I could look back on during the hard days - a little corner of the internet that was really just for me, my friends and my family. I started making short montages of me in the gym, videos of little wins, and snapshots of moments where I genuinely felt joy. They weren't polished or strategic; they were simply reminders to myself that, even on the hardest days, there were still good moments worth holding onto.

Much to my surprise, people started following me. Then they started commenting. Then they started messaging me to say that my content was exactly what they needed, that seeing someone living with chronic illness in a positive light gave them hope, or that I'd inspired them to take their first walk, return to the gym or simply believe that life wasn't over after diagnosis. So, I kept going.

Over time, my purpose has changed. Today, my biggest goal is to push my name and face into mainstream fitness spaces and increase the representation of people living with invisible disabilities and chronic illnesses. We deserve to be seen in those spaces too. I want someone scrolling through a gym brand's page or walking into a fitness event to see someone like me and realise that chronic illness doesn't always look the way society expects it to.

One of the biggest misconceptions surrounding disability is that if you look healthy, you must be healthy. I almost want people to be surprised when they discover that I'm disabled, because that surprise creates a conversation. It challenges assumptions and opens the door to educating people about invisible illness in a way that statistics alone never could.

More than anything, though, I want to be the person I needed when I was first diagnosed. The person I needed when I was struggling to keep teaching, when I was grieving the life I thought I'd lost, and when I didn't know how to explain to the people I loved what I was going through. I want to be that big sister who has been there, made the mistakes, learned the lessons and can say, "I've got you." Not because I have all the answers, but because sometimes knowing that someone else has walked the path before you is exactly what you need to take the next step.

It isn't quite as happy and positive as it might seem, though, and this experience certainly hasn't been without its challenges. The first is that living with a chronic illness while working full-time is extremely challenging. Add creating content, replying to messages and trying to keep up with social media on top of that, and it can become overwhelming very quickly. I can't be as consistent as I'd like to be, and that frustrates me. Some weeks, I genuinely don't have the energy to post at all. Then, the following week, one of my students will casually tell me they've seen me on their For You Page because one of my videos has gone viral, and, if I'm honest, that usually puts me off posting for the next couple of months! It's a strange balance between wanting your message to reach people and suddenly realising just how many people are watching.

I've also been incredibly lucky overall, but the internet isn't without its negativity. I've only experienced one real troll, but it was enough to seriously knock my confidence. After sharing my personal experience of how exercise had helped my symptoms, someone created posts about me, calling me dangerous. That really hurt. I have always been so careful to make it clear that I am only ever sharing my experience, not telling anyone else what they should do. Chronic illness is so individual that even two people with the same diagnosis can have completely different experiences. To feel like I was being publicly criticised for simply sharing what had helped me felt incredibly unfair. For a while, I genuinely considered deleting my account altogether.

I also don't think imposter syndrome ever really goes away. Thousands of people now follow my page and trust what I share, and that can feel like a huge responsibility. I often catch myself wondering, What if I'm wrong? What if I recommend something that doesn't work for someone else? We all know what it's like to desperately buy another supplement, another electrolyte drink or another gadget in the hope that this one might finally make us feel better. Our community is vulnerable, and I never want to take advantage of that.

That's why I'm incredibly selective about the brands I work with. At the time of writing, I only work with two brands, despite regularly receiving messages from companies and apps asking to collaborate. If I haven't genuinely used a product, if I don't believe in it, or if I wouldn't recommend it to a close friend, then I won't promote it. My community's trust is worth far more to me than a paid partnership, and I hope that's something I never lose sight of.

None of this, however, takes away from the abundance of positives that have come from sharing my journey. In fact, they far outweigh the negatives. One of the most unexpected gifts has been the connections I've made with people I've never met. There is something incredibly special about celebrating someone's first trip back to the gym, their first walk around the block, or simply a day where they felt a little more like themselves. Equally, it's a privilege to be there on the difficult days too, when they need someone who simply understands.

One thing that means a lot to me is hearing from young people. As a teacher, I'm already passionate about supporting them, so it's been incredibly rewarding to have teenage girls reach out asking for advice about navigating school with chronic illness. Sometimes it's as simple as talking through what reasonable adjustments they could ask for, how to approach a conversation with a teacher, or reassuring them that they're not "being dramatic" for needing support. Knowing that I can use both my personal experience and my professional background to help someone else feels incredibly meaningful.

More than anything, though, it's the messages that remind me why I started. The ones that say, "I went to the gym today because of you," or "I finally feel hopeful again," or simply, "Thank you for making me feel less alone." Those messages never get old.

If I'm honest, my goal has never been to build a huge following or become an influencer. If I can help just one person each week feel a little less frightened, a little more understood, or a little more hopeful about their future, then that's more than enough for me. To me, that's what success looks like. 

By Jessica Mather (@fitness.with.pots.jess)