If you’ve been following me for a while, then you know I’m all about keeping things real. Whether it’s sharing the raw realities of pregnancy from having my two teenage children, speaking about postpartum changes, or my professional bodybuilding journey and fitness for maintenance as a mother, I firmly believe that keeping secrets only builds up walls.
I received my late life diagnosis of Hypermobile Ehlers-Danlos Syndrome recently, and sat down for an incredibly honest chat with the team at Disability Horizons for Disability Pride Month to share my reality. It took a whole lot of courage for me to come to terms with, understand and open up about my invisible disability journey and I am incredibly thankful for such organisations, businesses and platforms that help to make those suffering in silence feel less alone.
We spoke about how I’ve spent a lifetime masking and hiding my pain through an undiagnosed connective tissue disorder that has become more prominent in my thirties. For years, I pushed through chronic, unexplainable pain and even became a professional natural bodybuilder because I learned to use my pain as fuel. I just assumed everyone else felt the same way and faced the same challenges, so never complained or asked for help as my doctor didn’t understand or provide solutions to my chronic symptoms.
Whenever I eventually asked for help, I felt gaslit or dismissed by doctors who assumed I was just a tired mum or living with the wear and tear of life as a gym-goer and had brought it on myself by overdoing it. It wasn’t until a late-in-life diagnosis in 2024 that everything clicked. It turns out that I actually suffer from Hypermobile Ehlers-Danlos Syndrome (hEDS)—a connective tissue disorder that means my joints are incredibly fragile, and my body can just shut off like a light switch, causing me to collapse without warning. Pair that with late diagnoses of autism and ADHD, and suddenly my entire life makes so much more sense.
Dropping The Armour & Raising Awareness
It is incredibly scary for me to share these parts of myself that I’m still coming to terms with. On social media, people look at me and see a strong, athletic woman. They don’t see me randomly passing out at the school gates or feeling absolute shame when using my Access Card because I don’t look disabled enough to sit down or urgently access a toilet.
But that is exactly why I wanted to do this interview. Invisible disabilities are completely valid. We shouldn’t have to look a certain way to deserve compassion, understanding, or a seat on the train.
What blew my mind the most is that it was actually a comment on TikTok that led me to my diagnosis in the first place! Social media gets a lot of bad press, but online disability communities are genuinely saving lives and helping people to find answers when the traditional medical system falls short. If sharing my story helps even one person to feel less alone or gives them the courage to advocate for themselves, then every bit of vulnerability is entirely worth it.
Thanks To Disability Horizons
I also want to give a massive shout-out to the team behind the interview, Disability Horizons, which is a fantastic community, as well as an online shop for anyone navigating life with a disability, chronic illness, or mobility challenges.
Instead of looking like a cold, clinical hospital catalog, their shop is packed with genuinely practical, smart living aids designed to make daily life easier and more comfortable, with items such as adaptive clothing that combines style with easy dressing, kitchen and bathroom aids to take the strain off of fragile joints – perfect for my hEDS flare-up’s!
They also have mobility aids and wheelchair accessories for staying independent on the go, and car travel accessories and daily essentials to help people to navigate the world on their own terms. It’s proudly disabled-led, meaning the products are chosen by people who actually understand the lived experience of needing them, with no judgement, just brilliant solutions.
I would love to hear what you think of the interview, and I hope that you’ll also have a browse of their amazing shop. Let’s keep talking, breaking down taboos, and lifting each other up!
You can read my interview here with Disability Horizons.
