‘The problem was there 2 years prior and no one believed me.’: Disabled chronic illness warrior shares long journey to diagnosis

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Growing Up

“Growing up in a world not built with disability or chronic illness in mind is difficult both mentally and physically. It poses so many barriers and, frankly, hurtful experiences. But here I am to tell my story of how I still continue to face these barriers head on and with a smile on my face.

Growing up in the 90s in Edinburgh, Scotland, I always knew I was different from the other kids at school and was constantly made aware my gait and mobility were abnormal. All my childhood I was in and out of hospitals seeing consultants and being put through numerous, rigorous testing which I found absolutely terrifying. I will never forget my first MRI scan when I was 8 years old. The noises above my head from the machine spinning around me at what felt like 100 mph sent me into a panic, and I felt helpless and trapped. I still can’t remember how long I was in that machine for but it felt like hours. 

young girl dressed up in her school uniform
Courtesy of Jessica Oliver

Unfortunately, this was just the first scary experience of many throughout my childhood. Even after continuous MRIs, physiotherapy, and gait analysis, amongst other things, the specialists couldn’t figure out what was causing my worsening disability, so I was diagnosed with Idiopathic Torsion Dystonia. Which is a fancy medical term for, ‘Something is wrong but we don’t know what is causing it.’ Fantastic, right? I couldn’t understand why I wasn’t like everybody else.

I was always a happy kid, laughing and adapting to my disability, but I can’t shy away from the hardships either. I was bullied for most of my childhood because of my weight and disability. These experiences shaped me and affected my mental health greatly, even today. I still have confidence issues regarding how I present myself to the world, but as I grow older the less I seem to give a crap. The phrase, ‘Kids can be so cruel,’ is so true though.

Disability awareness and inclusivity wasn’t a big thing in the early 2000s, so I was just seen as different and an easy target. I felt like I would never fit in. My super power was to remain authentic and truly be myself by expressing myself through how I dress and with dying my hair bright red because that was who I was. I still am that alternative girl with the piercings and bright hair! 

chronically ill woman standing on deck
Courtesy of Jessica Oliver

I am also proud of myself for still laughing and bringing smiles to my friends’ faces through my love of humor. That specific time in my life was dark for me, but these were my coping mechanisms. I made sure to surround myself with the people I loved the most. Something I also pride myself on, still to this day, is my ability to stay kind and give empathy no matter how the world treats you. It is SO easy to become bitter when you have grown up surrounded by negativity regarding how you look or regarding your health problems or disability. I will never be that person. My disability has shaped me into a thick-skinned, kind, and loving empath and I honestly wouldn’t change it for the world.

Worsening Symptoms

Fast forward a good few years to around 2009, things started to spiral out of control. I was no closer to obtaining a diagnosis and I felt an overwhelming sense of pure helplessness. ‘What is going on with me? Why are things getting worse?’ I was so confused as to why my ability to walk was slipping away day by day, week by week. I was only 20 years old and I truly felt my life was ending before it even began. 

chronically ill woman sitting in front of fountain
Courtesy of Jessica Oliver

The months would go by and more symptoms would emerge. I would be exhausted as soon as I woke up; I would have no energy to do anything or enjoy anything; my body was basically forgetting how to walk, which ended up with me requiring my first ever walking aid. Things looked bleak and no matter how much I spoke to my doctor, I was dismissed by them stating, ‘It’s all in your head, Jessica. It’s just your severe anxiety playing up. You CAN walk, it’s all mind over matter.’ 

Something I am really relieved about, and that is more openly spoken about nowadays regarding disability and chronic illness, is the sheer medical negligence and trauma that comes with fighting for a diagnosis. The feeling of pure despair and vulnerability I wouldn’t wish on my worst enemy. No one took me seriously and would blame my worsening mobility and the worrying symptoms on my fragile mental health or the fact I was overweight. I NEVER stopped fighting, but little did I know it would take another 8 years to finally get somewhere and get my official diagnosis! 

chronically ill woman looking out into the water
Courtesy of Jessica Oliver

2018 my life changed forever after a serious accident in my home. I was brought into the hospital after a bad fall and losing all sensation from the waist down. The A&E consultant dismissed all my symptoms of paralysis and said to me, ‘There’s nothing visibly wrong with you, but I will give you the name of a professor I think might be able to help.’ I felt appalled as I couldn’t feel my legs and no one was concerned, but I was so fed up of being made to feel insane, I left and didn’t argue as I didn’t have the mental strength.

chronically ill woman in hospital bed with IV and oxygen
Courtesy of Jessica Oliver

Proper Diagnosis

Six months after I asked my doctor to refer me to this specialist, Dr. Stone, I got my first assessment with him and it changed everything. I was diagnosed with Functional Neurological Disorder and I burst into tears when I returned home after the appointment. Over 20 years of fighting medical professionals. I was not upset by the diagnosis; I was in shock and it was tears of happiness and relief running down my face. Someone listened to me, heard me out, and confirmed I was indeed a typical case of FND. He apologized on behalf of all the terrible doctors and experiences throughout my lifetime to get to this point. 

He also confirmed that on top of my FND causing me the inability to walk, the doctor at A&E was wrong. I needed urgent spinal surgery because my spinal cord was crushed — hence the paralysis! The ANGER I felt when I got the call telling me I needed urgent major spinal surgery was unreal. The problem was there 2 years prior and no one believed me.

chronically ill woman looking out at lake scenery
Courtesy of Jessica Oliver

Living With FND

Living with FND has been a rollercoaster. FND means my body’s nervous system is completely broken and it causes a lot of symptoms, some of which I suffer from badly — chronic pain, paralysis and inability to walk, chronic fatigue syndrome, tremors in my entire body, chronic migraines, no balance and terrible coordination (amongst many other lovely chronic illness symptoms). It’s a difficult beast to exist alongside as it likes to make everything a challenge, but I always adapt and evolve as FND is such an ever moving, always changing condition. I must move, change, and evolve with it. 

I am now a proud wheelchair user as it was an aid I desperately needed to be able to live my life to the best of my ability. My wheelchair is my chariot of freedom. It’s not me giving into my disability, it was me fighting back and being hungry for all life has to offer me now that I have wheels to get me there!

I always thought life was doom and gloom living with such a life restricting disability and illness, but honestly it’s not! Yes, I can’t go ice skating or climb a mountain, but who cares? I have found happiness in so many other things. I have found a love I never thought I would ever have and now he is my amazing husband. I have been to college and learned new, life-changing things I will take with me forever. I found happiness in traveling to Scotland’s beauty spots with my husband.

disabled chronically ill woman in her wheelchair with husband
Courtesy of Jessica Oliver
chronically ill woman looking out at greenery and mountains
Courtesy of Jessica Oliver

I am also helping out amazing charities I am so passionate about and have started a blog and Instagram dedicated to discussing life as a disabled, chronically ill person. I hope it reaches people like myself, to remind them they are not alone. I want to be that person I needed when I was younger. A disabled friend who understands, the agony aunt who wants to listen, and the supporter to cheer you on and encourage you to live your best life. These are all things I wish 20-year-old Jess had when she needed it while lost in the depths of illness and uncertainty.

My 33 years on this earth so far may not have been straightforward or easy, but one thing I will say is ALWAYS trust your gut and get a 2nd or even 3rd opinion! You are the expert on your own life and body. I will never regret fighting for my answers and to receive the closure that it wasn’t all in my head.

Now that I know my body’s limitations and needs and have a much better understanding of them, I will make sure my future is full of hope, joy, determination, and resilience all while doing it with my supportive husband, family, and friends. 

disabled chronically ill woman in wheelchair with a friend
Courtesy of Jessica Oliver

Living with a disability or chronic illness isn’t easy but there is no right or wrong as to how to live your life. Always do what’s best for you and no one else. Don’t censor yourself or find yourself shrinking to hide away to take up less space in people’s lives. Live your life unapologetically, just the way you are, and never change for anyone.

My hope for the future is that FND and chronic illness is taken more seriously and the research into these conditions will continue in order to help everyone who is suffering from them. Everyone deserves to gain a solid, efficient diagnosis and receive the correct support.”

disabled chronically ill bride ready for her wedding
Courtesy of Jessica Oliver

This story was submitted to Love What Matters by Jessica Oliver of Dumbarton, Scotland UK. You can follow her journey on Instagram and her blog. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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