Tiffany, age 31, California
Postural Orthostatic Tachycardia Syndrome (POTS) is a condition that affects blood flow. It wasn't until 3 years ago that I was formally diagnosed with this condition and my journey to my diagnosis was not simple. Most people and doctors are not familiar with this medical mystery, as research is not fully sure what causes it. But, to sum it up, basically, your body's autonomic functions do not work properly. For me, my body is constantly in fight or flight response. What this means is that simple day-to day tasks can elevate my heart rate to as high as 160 beats per minute when standing. Imagine feeling like you just sprinted 100 yards but in reality you just walked up a single flight of stairs.
Work can be extremely challenging for individuals like myself who are diagnosed with POTS. My professional background is in education. I never really wanted to hold a full-time job, as I felt it was too draining. Thus, I started my part-time career as a college counselor. I remember working 9 hours a day and most times I would be completely out of commission the next day. I never realized that my "extreme" exhaustion was due to my body being in overdrive. Then, I started to get more migraines. POTS and migraines go hand in hand. In fact, according to The National Headache Foundation, "nearly 30% of people with POTS have migraine." My migraines were so severe that I could not work and would have to call out sick. I would miss a whole day and typically the following day of work due to the post-migraine hang-over.
Luckily, I found some relief by switching my schedule to mostly remote and then in 2020, I took on a full-time, fully remote job as an administrator in higher education. As mentioned earlier, I never wanted to hold a full-time job, but because this was fully remote I gave it a try! I cannot tell you how much remote work helps individuals like myself with a disability. When I needed to take a break and lay down, I was able to. Or if I was in a flare and needed to use the restroom every 20 minutes, I was able to. Working from home allowed me to work with my disability but still hold onto a job. Sadly, like many Americans, my position was eliminated during COVID, which lead me to focus on my own business. Custom Pet Portraits by @Tiffany_Dnaka_. Owning my own business has truly given me so much of my health back. I no longer feel "guilty" if I need to take a nap mid day. If I complete my work from the comfort of my couch, that's okay too. The best part, I am happy to report, is that I have been in remission of my migraines now for almost 1 whole year. For some, this might sound like a small victory, but for me to not have debilitating migraines is one step closer to feeling like my body is working with me and not against me. Life works in mysterious ways, I don't know if I will ever know why I have POTS, but for now, I paved my own career path, all while accommodating my body!