Sadiya's Story
Q1: Tell us about you? What health conditions do you live with and how have they impacted your life?
Hi! My name is Sadiya and I live with multiple chronic health conditions.
I first began experiencing absent seizures that caught the attention of one of my extracurricular teachers. During these episodes, I’d space out, not respond when spoken to, and display unusual eye movements or fiddle with my clothes. Unfortunately, doctors initially dismissed these symptoms as anxiety and vitamin D deficiency. My family and I reluctantly accepted this explanation, feeling there were no other options then.
But my symptoms continued to worsen - one day during the school holidays, as I was studying, I attempted to stand up and go to the bathroom, but I couldn’t feel my legs. As panic set in, thankfully, my mum found me. We waited an hour or two, hoping things would improve, but they didn’t. My legs remained unresponsive, stiff, and ice-cold to the touch, and I couldn’t stand or move, so we rushed to the hospital determined to finally figure out what was wrong.
I ended up spending two weeks in the hospital, enduring constant needles in my feet and blood tests, but it seemed like everyone was uncertain about what to do. It was only during this time that they began to realise the situation was likely more complex than they initially thought.
Feeling confused and scared, I found it challenging as the doctors struggled to effectively communicate with me. All I wanted was to return home and regain a sense of normalcy like my classmates and friends. When I finally worked up the courage and asked about my discharge and the nature of my condition, they shared their suspicion that I might have FND - functional neurological disorder.
Leaving the hospital with my new diagnosis was not what I had envisioned. I had hoped that upon receiving a diagnosis, a cure would follow, allowing me to return to my normal life.
However, the reality was different. I was discharged, and the harsh truth set in—there was no cure, and I would live with this condition for the rest of my life.
For the next two months, I remained completely paralysed, now relying on a wheelchair to get around.
I found myself dismissed by doctors again, but this time they told me, “there’s nothing we can do, it’s a chronic illness”.
But I still struggled to get used to my new reality. Despite my efforts to return to school and strive for a semblance of normalcy, adapting to life as a new wheelchair user proved more challenging than anticipated. I often had to rely on friends and classmates for assistance in getting to my classes. This experience left me feeling markedly different from everyone else.
I’m lucky to have so many supportive people in my life who surprised me with a self-propelling wheelchair, so I don’t have to ask for help anymore. But I still struggled to get used to my new reality
I eventually regained the ability to walk, but then I received additional diagnoses of chronic pain and endometriosis following several scans. Also, I’ve always known I was neurodivergent, but after my health challenges, my specialists decided to delve deeper and advocate for a complete autism and ADHD diagnosis.
This period was incredibly overwhelming and difficult for me. Processing my emotions and coping with everything became a significant struggle as, despite my diagnoses, I continued to encounter a handful of unsupportive medical professionals who continued to label me as ‘insane’. This left me feeling very lonely and misunderstood.
FND (Functional Neurological Disorder)
Functional neurological disorder (FND) describes a problem with how the brain receives and sends information to the rest of the body. It includes symptoms like arm and leg weakness and seizures.
Chronic Pain Syndrome
Endometriosis
Neurodiversity
Q: What has been your biggest challenge? Or the hardest thing you've had to come to terms with?
When I started walking again, I was told that incidents where I lose feeling in parts of my body, possibly needing a wheelchair, could happen repeatedly throughout my life. Accepting and coping with this is still something I’m figuring out.
It is hard to accept that as I am going through all of this, my friends are enjoying late nights, concerts, and parties—having a type of fun I just can’t relate to. Accepting that my good days might differ from others and realising that my life might not follow the same timelines is one of the hardest things I’ve had to come to terms with.
It’s upsetting to see others my age achieving so much now. Even though I’m supposed to find comfort in the idea that I can still have those achievements later, it’s still tough feeling ‘behind’ everyone else.
Q: Despite your challenges, what brings you joy?
When education let me down, I discovered my passion remained accessible in public speaking and debating. After I received my diagnosis I did a lot of research and it made me realise how many people with conditions similar to mine face challenges such as not being believed by medical professionals or lack support in education and work. This realisation fueled my desire to advocate for others in similar situations, which has given me a purpose and bought me so much joy.
I initially found a passion for debating and public speaking in school, but when my teacher, who had coached and guided me, left, I took it upon myself to carry on the group to continue pursuing my passion. I began training both myself and others, initiated fundraising efforts, and even created a TikTok account to share more about my experiences with chronic illnesses which reached a lot of people!
I am also a huge Taylor Swift fan (my favourite albums are folklore and reputation!) and I enjoy kickboxing!
Q: What has been your biggest achievement?
My biggest achievement is that I survived, and I continue to survive, by holding onto small moments of joy in a world that was never designed with people like me in mind. This world wasn’t made for neurodivergent and chronically ill individuals like myself. Yet, my greatest achievement lies in the fact that I’ve not only survived but retained a strong sense of self and held onto the things that truly matter to me throughout it all.
Q: what advice would you give to others in the same position as you right now?
When thinking about this question, I think of those fighting to be taken seriously. I wish I could give them a big hug, look them all in the eye, and say “you are NOT insane”.
Even if medical professionals don’t understand your condition, you have every right to seek help and recover.
You don’t need to get sicker or have more diagnoses to deserve support. Recovery is your right.
