My name is Alicia Williams, I am known as Chronically Alicia on social media. I am 23 years old, live in the United Kingdom and suffer from a condition called Functional Neurological Disorder, or FND for short.

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I was diagnosed with FND in January 2023. However, I started to become unwell with FND a couple of years before my diagnosis. My neurology team have even traced early warning signs of FND to my teenage years. FND was the missing link to explain all of the unexplained medical problems I had growing up as someone who was constantly in and out of the doctor's office. However, my FND manifested itself after nearly a decade of undiagnosed stage 4 endometriosis disease. 

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The first ‘obvious’ sign of my FND developing was non-epileptic seizures. I will never forget my first NES. It was the reason I was diagnosed with FND. I feel incredibly lucky to have had a supportive family and medical team who recognised what was happening to me. I was rushed into hospital during my first NES because my airway was intermittently being partially restricted. Unfortunately, we now know this was a muscle spasm in my airway and is a symptom of my FND. It is important to note, that this does not happen to all FND patients but purely is my experience and why I was diagnosed so quickly after this emergency hospital visit.

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Before this emergency happened, for many years I was routinely experiencing collapses and absence seizures. We weren’t aware of this at the time and attributed it to my low blood pressure. After investigations from my medical team, it was determined these collapses were the early signs of FND and would eventually turn into NES.

 

FND is  misunderstood and underrepresented in the chronic illness space which is why I am so passionate about sharing my journey online. We desperately need more research, awareness and knowledge of this disorder. FND can be reversed over time, but this is not guaranteed. There is no ‘quick fix’ to recovering from the disorder, the effects can last from weeks to a lifetime. FND is known in the community as an ‘umbrella term’. There are multiple different types, categories and symptoms of FND, each patient’s experience is individual and unique to them. The patient can even experience ranging symptom severity and length throughout the day, this has been my case.

 

Currently, there is no one medication can you take to help treat FND. FND treatment is purely based on therapies, rehabilitation and symptom management. These strategies may include taking medication for very specific symptoms but are not a ‘one size fits all’ solution. 

 

I have been on low-blood pressure medicine for a couple of years to ease the impact of my collapses. This medication has had a positive impact on my ability to stay conscious whilst doing simple activities that involve increasing my heart rate. For example, climbing the stairs, taking a shower or getting dressed.

 

My FND causes full-body chronic nerve pain and muscle spasms. I have been on spinal blocking medicine for a few years to help to reduce this pain. This medicine does not completely remove the pain. It instead ‘numbs’ the sensations allowing me to concentrate on living my life and putting the pain to the back of my head. I was originally put on this medication for my chronic pelvic pain (caused by stage 4 endometriosis disease). However, this is now a crucial part of my FND management and the one medicine I see to have the most positive impact on my daily life and mobility.

 

Aside from medication, I am part of a Chronic Pain Programme helping to improve my understanding of chronic pain. These specialist clinics also allow me access to pain management specialists, physiotherapists, occupational therapists, pain psychologists and a ton of educational resources. I am incredibly lucky to have this clinic on my doorstep because it is the reason I can now use a self-propelling wheelchair without screaming in pain.

 

If I had to only pick one therapy to help my FND it would be mental health support. My mental health was always been challenging but my FND diagnosis put a real strain on me mentally. I cannot see a time when I will choose to not participate in some form of mental health counselling, it has become a part of my life. From EMDR trauma therapy to pain psychology, I have dabbled in many mental health treatments for FND. They have all been beneficial in their own way and have all contributed to my recovery.

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However, a common misconception of NES and FND is that they are only psychological and only caused by mental health factors. This is not the case. Although my FND is heavily impacted by my mental health, factors like my environment, my other medical conditions, my pain level at that moment, my menstrual cycle/ hormone levels etc all play a huge role in how my FND presents itself.
 

FND has changed my life. My life will never be the same. It has changed me as a person, physically, mentally and emotionally. I do not know if I’ll ever be the same woman I was before FND. FND has challenged me in ways I could have never imagined I would be challenged as a young adult. I have lost friends, gained friends and learnt the true meaning of friendship and love. Whoever it may be, having a supportive network of people around you is vital. Those are the people who literally have picked me up during my worst times and got me through to the next hospital appointment.
 

I have gained an entire community online of supporters, fellow FND warriors and friends who I can depend on when I need them. I have met some of my closest friends I have through social media and I wouldn’t have those relationships without FND. It’s not all sunshine and rainbows but I can acknowledge how FND has changed my life and me as a person for the better.
 

You are not alone.
 

FND is a rare disease for a reason, it is rare. Although it is rare, there are communities of fellow FND warriors out there. The biggest hurdle is knowing where to find these communities and resources to help build a network of people around you. Whether it's a virtual online network or a physical in-person one, to me it doesn't really matter. 

Engage in as much FND support as you can and want. There will be something out there that will help you, you just have to be patient. FND is tough, it is not for the faint-hearted. We are all in it together whether we know it or it.
 

Don’t be hard on yourself on your down days, make the most of your good days. You never know what's around the corner and when you could next make a huge step in your recovery journey.
 

I hope you enjoyed reading my FND story.

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This is a short snippet of what my life is like living with FND. There is so much more to my story than what you’ve just read but this should give you a rough idea of what I’m about. If you’d like to know more about my FND journey, follow the social media links to my profiles where I shout about FND from the... ROOFTOPS!
 

Always remember you are enough and more than your FND!