The Challenges of Returning to Work After Being on Leave for Dysautonomia

As I drove into work that first day after my medical leave, I felt like a warrior returning to battle. I was stronger and I was smarter and I was ready to fight my invisible illness. Dysautonomia/postural orthostatic tachycardia syndrome (POTS) had knocked me down a couple of times, but it was not going to win this time. While some people questioned my decision to return to work after struggling for over a year to define and battle POTS, for me it was an easy decision. For me, returning to work proved to myself that I was back to “normal.” That I had returned to the point I had fallen from when I had my first POTS attack. I was armed with knowledge and salt!

At work, it seemed to most that things were back to normal. Just a few additions of Propel bottles and salt containers scattered about my desk. I did not want to bring attention to my dysautonomia, I did not want to be seen as the weak link in the team. But the struggles I faced at work weren’t as easy as I hoped.  Just being gone from work for a year made it tough to get back into the swing of things, but there were other battles waiting to be fought. 

The simple act of walking to my car after work knocked me down after the first wave of summer heat rolled in. I had been prepared with a cooling vest, but I never noticed the incline of the sidewalk that seemed to weigh down my every step in the heat. I battled that problem head on, got myself access to a side door so the walk to my car parked in handicap would be even shorter (and level).

The agile environment at work now encouraged short stand-up meetings. I could stand for 15 minutes now, I was not worried. But on a not-so-hydrated day, right after a meal, a 15 minute meeting turned into a nightmare. My heart rate shot through the roof as I shamelessly commandeered the only chair. My heart rate then crashed into the 30s leaving me with chest pains. I returned quietly to my cubicle and rested until vitals got normal again. Meals would now be scheduled better… and I stored another chair in the conference area.

I had experienced brain fog before my diagnosis, but the return of brain fog caught me completely off guard. After working on a project for a couple of weeks, a coworker came to discuss some details, but I couldn’t remember anything! I asked them to pause for a moment as I desperately skimmed my notes in hopes of triggering a memory. I could see confusion on my coworkers face as I tried to downplay the situation. Note to self, make better notes! Not sure how to work around this problem. 

I found that just walking with coworkers could be a struggle also and at times, I could not keep their pace. If they knew my battle, I asked them to slow down. Otherwise, I made a detour and would tell them I would meet them in a few minutes.

An interesting problem arose when I started needing to use the restroom a lot when I first got to work. I was on a salt regimen that worked at home before, but apparently not with my new schedule. I started taking more salt when I got to work, but that was not enough. I had to increase my salt pills in the early morning. Easy enough to fix, but those mornings were very unproductive.

But the biggest battle I face is the lack of knowledge about dysautonomia/POTS. It was like a friend said, I can’t just say I have POTS like I can say I have diabetes. There is no short 30-second explanation. So do I try to explain dysautonomia and spread awareness, or do I quietly fight my battles? There’s a fine line between awareness and complaining. I don’t want my battles to seem like my weakness, I want my battles to prove that I am strong. There’s no doubt in my mind, that my invisible battles will continue, but I am ready to face them head on and show dysautonomia who’s boss.

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