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Just Because I'm Working, That Doesn't Mean My Illness Got 'Better'

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You don’t just recover from postural orthostatic tachycardia syndrome (POTS) or other chronic illness like you would from the flu. It is more about managing the symptoms, finding what works for you and trying to avoid a flare up.

If you see someone with POTS working, please don’t assume they are well or “better.” We’re not. We still live with our condition day in and day out and all the symptoms that come with it. If we are able to manage work for a season of life, we often still experience debilitating symptoms while at work, but we push through and do what we can. Certain symptoms may be worse one day and milder the next, but they’re always there to some degree and there’s a lot we do behind the scenes just to get through the day.

We want to work. We want to live productive lives. We need to make a living like everyone else
so we make the best of every day and try to pace ourselves as best as possible so we don’t get caught into a flare.

There have been and are times where the migraines, brain fog, fatigue, and near syncopal episodes become too debilitating for me to work so I’ve had to take time off or go on medical leave. There are some seasons of life where I simply can’t fake being healthy anymore because of the increased symptoms or flare. During these times, I’ve learned that it’s best not only for my health, but for the sake of my employer that I take a step back.

I like to put forth my best effort at work and it’s important to recognize when health is compromising that. I am currently a teacher’s aide at a middle school helping kids in our special services center. Typically, I go into work around 11 a.m., because mornings tend to be the toughest for me symptom wise, and then work until about 3:45 p.m. An occasional day here and there, I’ll have to come in earlier, but then I’m allowed to leave earlier. I’m very thankful for this setup that I have.

Work is hard on my body and wears me out, but right now working at this capacity outweighs the cons for me. The kids are worth it. The staff is worth it. And having structure for some of my day and just being around people is worth it. If you can work or are looking to get working again, it’s important to find something that works for you and doesn’t compromise your health.

Staying on a strict schedule/regimen and staying as healthy as possible (cold, flu, virus wise) is crucial to maintaining employment status as well. If you’re constantly pushing yourself and overdoing, it’ll catch up to you and you’ll be at risk of missing work. Part of not overdoing is being careful about how much you load up your weeks during your off hours.

Since I am currently working, it’s harder for me to have as many weekly commitments after work and even during the weekend. I need to ensure I have allotted rest days. If I already have a few obligations or plans that week and realize I have a “free” night or two to work with, it would be unwise for me to fill up these available days as I need adequate time to recover from the day(s) prior. It can be hard to work and maintain a social life while dealing with chronic illness because of this. All you can do is the best you can and try to explain it to people close to you.

There are some people with POTS or chronic illness who are not able to work at all and if they were to work, it would make their health much worse and they would not be able to perform at even close to full capacity. If this is you, you’re not alone and please do not feel bad for having to focus on your health. Without your health, it’s hard to do much.

Getty photo by FS-Stock

Originally published: January 18, 2019
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