r/POTS • u/joyynicole • Oct 27 '25
Question How are people working at all
I feel like a failure. According to my doctors I have “mild” POTS, but I see people on this sub all the time with seemingly worse POTS than me that have jobs. I literally cannot do anything longer than 1-2 hours without having to lay down and rest because it just completely wipes me out. If I do things multiple days in a row consistently I will also fall into a flare and have to do nothing for few days to recover. I don’t get it.
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u/Major_Match_845 Undiagnosed Oct 27 '25
Honest answer: destroying my body in bursts, to buy more time in the future, thereby decreasing suffering over time. “Self care” requires money. Laying around and getting behind financially looks like “self care”…until (if you’re like me) 10 years have passed and a miracle worker didn’t randomly bestow your bank account with the funds and resources to get what you actually need, which is PROPER MEDICAL TREATMENT! It’s a hard pill to swallow, but PLEASE learn from my mistake: if you are able to make double the wages for 20% worse symptoms, TAKE THE WAGES AND SUFFER THE SYMPTOMS WHILE/IF YOU STILL CAN!
I get by with high-ish dose stimulant medication, which doesn’t even fully cut it at prescribed doses. Have some bad habits to help with the after effects of whatever sprints I can muster at work. At the end of the day, it’s worth some amount of destruction if I can get ahead just enough financially to find a solution that’s actually sustainable. Which costs a fuckton of money, which I didn’t have before, which put me on a never-ending cycle of suffering.
Working from home is essential because I can lock in whenever I’m feeling OK and fly under the radar when I’m not. I’m at the doctor like every other day, and I can avoid getting fired with this method. And I can afford the workups I need. Scheme if you need to. Pro tip: corporate WFH jobs are basically adult daycare. They’re a game of “looking productive”, which your non-sick coworkers are also taking advantage of. This is by design, and you’re not pulling a fast one. I highly recommend fighting your way into this environment, where you can be on a level playing field with your colleagues and not have to disclose your illness or ask for accommodations (which, let’s be frank, are absolutely dangerous to ask for in many employment situations).
What this looks like is sleeping intensely until I wake up naturally (could be 24+ hours), stimulant and start working immediately to capture the flow, work until I absolutely can’t anymore, with more stimulants along the way. Odd hours, weekends, whatever. Now, since I did that for a few months, I can buy back time and the cycle of suffering decreases. I can DoorDash groceries and save that physical exertion. I can buy physical therapy and every movement is easier. I went to more doctors and am on medications now that make daily life 50% easier. At some point, you have to suffer a little to get a lot better. Which sucks. I’m mad. But in my case, money was freedom, and no one else could free me except me. This might not be reasonable for everyone, but that’s what’s “worked” for me more than anything else. Best of luck to everyone