spoonfulsofchronic

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Hi, I’m Steph. I’m 34, I live in the UK, and I own more pyjamas than regular clothes — because, frankly, I spend most of my life in them. I live with a delightful collection of chronic illnesses: Axial Spondyloarthritis, Endometriosis, Adenomyosis, Fibromyalgia, Hidradenitis Suppurativa, and until 2021, SVT (which I evicted with a cardiac ablation). Most recently, Endo tried to take me out with a bowel obstruction. I held off going to A&E for 72 hours because I genuinely didn’t know if it was serious, or just “my normal,” and I was terrified of being dismissed again. That’s the reality of living in a body that constantly lies to you. Every day comes with pain, fatigue, medications, swelling, bleeding, and trying to figure out if I should rest or run to A&E (again). I rely on my amazing parents, who have been my constant support system — I literally wouldn’t be standing without them. Living alone isn’t possible, and neither is pretending this life is easy. Getting diagnosed was a battle. Nearly all of my answers came through private healthcare after years of being gaslit, misdiagnosed, or ignored in the NHS system. I was told I was “too young,” “too anxious,” or that it was “just women’s issues.” Spoiler: it wasn’t. I’m proof that medical gaslighting exists — and it can be dangerous. Before illness took over, I was a horse-riding, outgoing, sociable person. Now, I work hard just to get through the day — but I’m lucky enough to love my job as a physio, which gives me purpose and a reason to keep going. Still, I miss out on a lot. Social life? Practically extinct. And the pressure to “just push through” from able-bodied people who don’t get it? Exhausting. Every time I think I’m on the up, something new hits — and it’s back to square one (a.k.a. my bed). But here I am. Still here. Still sarcastic. Still trying. I share my story to raise awareness, to be brutally honest about the messy, painful, absurd reality of chronic illness — and maybe to help someone else feel seen. If you’re navigating this kind of life too, or just want to understand it better, you’re in the right place. #ankylosingspondylitis #ankylosingspondylitisawareness #chronicillness #chronicpain #chronicillnessawareness #chronicpainawareness #invisibleillness #invisiblepain #invisibledisability #invisibledisease #endometriosis #endometriosisawareness #fibromyalgia #fibromyalgiaawareness #hidradenitissuppurativa #adenomyosis #adenomyosisawareness #hidradenitissuppurativaawareness #invisibleillnessawarness #invisiblepainawareness #invisibledisabilityawareness #invisibledisabilityawareness #spoonie #spoonielife

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My endometriosis journey. Endometriosis has ruled my life since I was young I just didn’t know it until 2019 at the age of 29. It is a multi system disease that has been grossly understudied and underfunded and here I am in 2025 told the usual methods of control don’t work and it will grow back and I will continue to need surgeries. All whilst just trying to live my life and build a career I love. #chronicillness #chronicpain #chronicillnessawareness #chronicpainawareness #invisibleillness #invisiblepain #invisibledisability #invisibledisease #endometriosis #endometriosisawareness #adenomyosis #adenomyosisawareness #invisibleillnessawarness

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I’ve had an influx of new followers so this is an introduction to my chronic illness story ❤️ #ankylosingspondylitis #ankylosingspondylitisawareness #chronicillness #chronicpain #chronicillnessawareness #chronicpainawareness #invisibleillness #invisiblepain #invisibledisability #invisibledisease #endometriosis #endometriosisawareness #fibromyalgia #fibromyalgiaawareness #hidradenitissuppurativa #adenomyosis #adenomyosisawareness #hidradenitissuppurativaawareness #invisibleillnessawarness #invisiblepainawareness #invisibledisabilityawareness #invisibledisabilityawareness #spoonie #spoonielife