For two years I had been free of it…this condition that steals my life without warning. There was never a warning; that’s what I’ve hated the most about it. When I got that familiar feeling in the front of my head while sitting at my desk in the middle of a work day in March of this year; I just knew. I said nothing to my team in the room. I got up, snuck into the hallway and silently tested my walking and movement, but there was no need. I knew. This time, I didn’t recover until June.
Functional Neurological Disorder: What is it, and How Does It Impact Me?
Functional Neurological Disorder (FND), previously referred to as Conversion Disorder, is a condition where a person has a malfunction between how their brain sends and receives signals. Think of it as a misfiring between neurons.
FND is a condition that has had a slow growing research base and interest, due to its tip-toeing between being a neurological and psychiatric disorder. But don’t be mistaken; this disorder reduces the quality of life for the few that have it and results in very real, uncontrollable symptoms that often come on suddenly and without warning. For some the condition is persistent, but in others like myself, there may be periods of remission when you experience no symptoms.
For me, I was diagnosed with the condition at 19 years old, and I’ve relapsed twice since then (including this year). Luckily, between relapses, I was given 1-2 year periods with no incident, which I’m incredibly grateful for. You should know that a relapse means my entire life stops; and I have to adapt quickly.
For me, here are the symptoms I’ve typically experienced:
- Numbness in my limbs
- Eyes rolling back in my head until I can’t see
- Restricted mobility of my arms and legs (When I relapse I need to use my hot pink walker to move around and stand, otherwise I’ll fall straight on my face)
- Non responsiveness (It’s like I’m locked in my own body. I can’t see or respond but I can hear everything around me)
- Slurred Speech
- Extreme Fatigue
What Made This Year So Different?
I’ve told you about the typical symptoms, but unfortunately this year wasn’t so typical. This relapse was more aggressive, lasted longer and was harder on my body and my mind. This time after an episode, I was extremely nauseous, sick to my stomach for some reason. There were headaches. My eyes would pull so hard and painfully into the back of my head and the headaches were vicious. It genuinely scared me that my eyes would pop out of my head. My mobility was different too. I could not walk more than a few steps for at least a week. I was pretty much couch-bound and unable to care for myself, prepare my own food or bathe myself. I was so exhausted. I slept most of the day, for most days for a while .
The hardest thing about this intensity in symptoms was having to have a very real conversation with my partner and my mom about possibly hiring a care worker to help me at 23 years old. I hated that. We settled on a shower chair and a detachable shower head once I gained back a teeny bit of function; but even that was so embarrassing for me. One day I was fine, the next I wasn’t. My friends and family kept me strong during this time because this makes you feel like you’ll break in two. It’s not easy.
What I hated most about it was that I couldn’t work. I love my job and my coworkers and nothing made me feel more useless than not being able to contribute to something I’m passionate about. Up until May, I couldn’t even really look at a computer screen without having an episode. My body was not letting anything slide. I’m not a teenager or in school anymore so how was this going to work, I thought? This was my first “big girl” job and I had only been there since August of 2024. What was I going to do?
Support and Solidarity: How My Team Supported Me and Made Me Feel Safe
Before I tell you what my boss and my team did, let me say that I recognize that we’re a very small team (of 4 at the time) and that allows us some agility and flexibility which larger organizations may not have. I get that, but it’s not impossible. It costs nothing to support your coworkers or staff that may have invisible or episodic disabilities. Maybe you can’t do everything they did but it costs nothing to show human compassion to that person or to take the load off their shoulders in some way, no questions asked.
Use what I’m about to share with you as inspiration to do more and consider accommodations that are not a part of your formal or informal policy. More than anything, I hope your take away is that accommodations are not enough; we need to open our hearts to the people around us, especially in the workplace! These are the people we spend 8+ hours with a day. You never know how that will impact them or change the trajectory of their healing and recovery.
Let’s start with my boss, Corrie. The moment I first realized something was wrong, I was panic planning on how to sneak out of the office and get home so I could handle what was happening. When I made it back to the entryway of the office space, I mumbled some lame excuse about needing to go home. Corrie took one look at me and asked if I was ok, and I wasn’t. The tears fell down my face before I could stop them. The sobs ripped through me without me agreeing to cry. I was completely terrified.
She and my coworker Tyra helped me to the couch and Corrie held me in her arms while I sobbed and told me it was ok. Through my embarrassment and fear I apologized a million times for this happening at work but they both just made me feel so safe and ok to be weak in a place where I wanted to be my strongest self. They both managed to get a hold of my partner. Tyra stayed with me while Corrie drove to him to collect both him and the dusty walker hidden in my apartment. Together the three of them got me home and in my door, safe. As a few days passed I struggled with planning to go back to work and how this would all happen. When I got on the phone with Corrie the message was clear: “Your job will be here when you get back. The work will be here. This does not matter more than your health. We will handle it. You are supported. Take two weeks off and then we’ll talk about next steps”.
That was that. I didn’t have to argue for accommodations or support. I wasn’t told to push through it; they took the stress off my shoulders and asked what I needed. That small shift from the performative actions I was used to, to this present and compassionate team, sort of changed my life. I was allowed to take as much time as my body needed. They dropped food off at my apartment and my coworker Tyra (who is also a professional hairstylist) even helped me to wash my Type 4 hair and cut it for me, when I couldn’t lift up my arms to do so. My coworker Nicole, even though she’s remote in Cape Breton, made sure to message me and check in, with kind and heartwarming messages that brought tears to my eyes at a time when I really needed it.
They took it all away. In all of the stressful and scary decisions that I had to make and the things that were breaking me down, work just wasn’t one of them. When I was able to return to work in some capacity, there were no questions asked if I needed a meeting to be less than 30 minutes or couldn’t have my camera on. There were no stares when I made it back to the office with my walker and would have an episode in the middle of a conversation. They would quickly check if I was ok and then kept it pushing. And even that, that normalcy they provided when I honestly felt like a freak was life changing as well. Nobody stared or fretted, I was just me, just Sacred.
Lessons and Reflections:
- Empathy is incredibly important in tandem with accommodations. As organizations and institutions work on their accessibility plans and policies; we must remember that the emotional and human element is a part of supporting our coworkers and employees as well.
- That initial contact you have with an employee with an episodic disability is everything. How you treat them at the moment will impact whether they reach out to you for support or accommodations. They may not have discussed this with you prior or made a plan with you on their needs, especially if they’re in remission.
- Make accommodations the first part of your hiring and onboarding process. It can be uncomfortable to advocate for yourself and your needs when you’re well into a position; it can be embarrassing sometimes. By asking as soon as an employee starts, you take away the pressures of sharing later.
- Soon after I first started, Corrie asked the team to share any accommodations we may need with her if we were comfortable, and I shared that I had FND and what that would look like if it ever happened! When I relapsed in March, the team may not have seen it before, but they knew on some level what was happening.
For me, I’ve adopted a healthier mindset around my disabilities. I feel less of a pressure to be strong or perfect in the workplace and that’s taken a weight off me. I feel comfortable and happy to go to work and show up as myself. Whether that’s the Sacred who is fine and able-bodied, or the Sacred who is on a walker today. I know I’m definitely where I’m supposed to be.