Becca F.'s Story
My SMAS journey long before I had a name for what was happening to me. Around October 2019, I started to become unwell. I was constantly sick, painfully bloated and in severe abdominal pain. Eating became something that I feared rather than enjoyed. My body was clearly struggling with something, but for a long time no one could tell me why.
I was officially diagnosed in August 2021, but before that my symptoms were persistently misunderstood. Instead of being investigated properly, I was told I had anxiety and an eating disorder. At one point 2 weeks before my diagnosis, there were conversations about admitting me to a psychiatric ward. Being told that my very real physical pain and suffering that I was living with was “all in my head” was deeply traumatic. I knew that I wanted to eat, I knew that I wanted to be well. But my body simply wouldn’t allow it and no one would listen.
Living with SMAS means constantly battling your own body. I can barely eat anything without pain or vomiting. The sickness, bloating and pain is relentless. I’ve tried multiple treatments to manage my condition, including several NJ feeding tubes, and a PEG-J tube which both unfortunately failed. I’ve had more hospital stays than I can count, dietary plans and medications aimed at easing symptoms, but nothing has been a complete solution. Tube feeding wasn’t a choice, it was survival. Even now, nutrition is something I have to fight for every single day. Each treatment has been a physical and emotional struggle, but it’s all part of simply keeping myself alive.
The impact of SMAS has gone far beyond my physical health. When I first became unwell, I was pursing my dream career at university to become a nurse. I wanted to care for others and make a difference. As my health deteriorated, I was forced to grieve the future I had planned. Accepting that I am now too unwell to manage such a physically demanding job has been absolutely heartbreaking and it still is. My mental health has suffered enormously, and there are days where I feel like SMAS has taken parts of my life that I’ll never get back.
Alongside SMAS, I also live with POTS, ENDO and chronic fatigue. Managing multiple chronic illnesses means that rest is never truly restorative, symptoms overlap and recovery feels constantly out of reach and god forbid I get a “normal” illness on top of that. It’s exhausting in ways that is truly hard to put into words.
My experience with healthcare professionals has been very inconsistent, while I did eventually receive a diagnosis, the delay and dismissal caused lasting harm. Feeling unheard, doubted and mislabelled, left me questioning myself at the time, when I needed compassion and belief. Rare conditions like SMAS highlight how easily patients can fall through the cracks when awareness is lacking.
However, what has kept me going is the support around me. My family, my friends and especially my partner. They’ve stood by me through hospital stays, tubes, setbacks and the emotional turmoil of chronic illness. Their support has reminded me that even on my darkest days I’m not alone.
I’m sharing my story because SMAS is real, devastating and often invisible. Awareness matters. Early recognition could prevent others from getting as unwell as I did, being misdiagnosed, mislabelled or made to feel like they are imagining their suffering. No one should have to fight this hard just to get help and be believed.
Even though SMAS has changed my life in ways I never imagined. I’m still me, I’m still here, I still laugh, I still dream and I still love, even if my body doesn’t cooperate. I’m a little different now, a little slower, a little more tired, but that doesn’t make me any less whole. Chronic illness has taken so much for me, and some days it truly does feel impossible, but it hasn’t taken my heart, my mind or my fight. I’ve learned what true resilience looks like, how deep love and support can carry you, and how to find small moment of joy and strength even when life feels totally unfair. I hope anyone going through SMAS or any other chronic illness knows this, you are still you, you are still enough, you still matter. Your life, your dreams, your spirit they’re still yours. The path is just a little bit different now.
