“One day I appear ‘normal’, the next, I have a walking frame:” Megan Hackwood on life with a rare condition

Picture this. You wake up slowly on a Sunday morning. You can hear the neighbours mowing the lawn, smell the fresh cut grass. Birds are chirping away outside. There is nothing unusual or out of place, but something just feels… off.

Groggily, you roll over to reach for your phone and notice that your legs are feeling weird; almost like you’ve been sitting cross legged for an extended period of time and they’ve gone to sleep. As you reach out your right hand, you notice that it’s trembling. Pins and needles start to form up your arm, stretching across your shoulder. Your nerves start to pinch and zap, and you can feel the muscles start to recoil.  

Suddenly, your legs go totally numb. Your feet feel hot and cold at the same time, with sharp needle-like pricks, and you have such severe weakness in your limbs that you physically struggle to lift yourself up to sit in bed. Pain melts across your entire body like a snake slowly enveloping you in a tight coil.

This is what happened to me the morning I woke up with functional neurological disorder. 

One way to explain functional neurological disorder (FND) is by considering the human brain as a computer. There is nothing physically wrong with the hardware, but the software is malfunctioning. The exact cause of FND is unknown, but it involves a problem with the body’s nervous system. Symptoms can include motor dysfunction, seizures, vision and speech difficulties, chronic pain and fatigue, muscle spasms, tremor, and paralysis. 

Unfortunately FND is very poorly understood and, as such, is under-diagnosed and often incorrectly treated and managed, resulting in poor patient outcomes. 

When I experienced the onset of FND I was hospitalised for a week and discharged in a wheelchair, with very limited information about what was wrong and what treatment options were available to me. I had no referrals, no resources and I felt completely alone. It was isolating, stressful and incredibly frustrating. 

What followed was months of back-and-forth trips to the emergency room, my GP, physiotherapist, psychologist and eventually my neurologist. When I finally did receive a diagnosis, all I was told was that “There is very limited information about this condition. Here are two websites you can look at and pass on to your GP.” At the same time, I was also formally diagnosed with an accompanying and more common condition called fibromyalgia. 

Having faced the challenge of many other health conditions previously, including supraventricular tachycardia (SVT), IBS, ovarian cysts and more, where I had been supported with information, referrals, treatment options, resources and an abundance of websites to research, I struggled intensely to process and understand this new diagnosis.

I was determined to not be reliant on a wheelchair and pushed myself each day to walk, improving my balance and strength, eventually moving out of the wheelchair to a walking frame, then to a cane. While some aspects have improved over time, I still live with persistent symptoms resulting in fluctuating physical ability, and flare ups happen sporadically with little to no warning.

Thankfully, my GP researched the treatment of my condition, and three years on I am now on a fantastic regime of helpful medications and have access to both mental health and chronic health management care plans, which help to provide me with subsided neurophysio, hydrotherapy and exercise physiology.

It’s incredibly difficult to manage a health condition that fluctuates in functional impact on a daily basis. One day I appear “normal”, the next, I have a tremor and a walking frame. I have watched my body change from being slender and athletic, to a version of myself that I couldn’t recognise for a long time, who was always puffy and inflamed, and at my worst point, 30kg heavier. 

Learning to accept my limitations and take the time to rest was, and still is, very challenging.

Today, while I still struggle, I have managed to find a balance and return to work. I fiercely advocate to spread awareness of my health conditions in the hope that it helps others on their journey and, having found various online support groups, actively contribute towards ongoing conversations to offer my support wherever possible. 

For Rare Disease Day, I am sharing my story alongside four other women with rare medical conditions for the ‘Champion Changemakers: Rare Disease’ Event to raise awareness and generate change for the people worldwide living with a rare disease, their families and carers. Join us online on February 28th 5:30pm AEST, you can get your free ticket.