I wanted to create a thread that can be used to share experiences about how PFS patients cope with work. If you’re a more moderate to severe case, and particularly if you have neurological symptoms, holding down a job in this nightmare can be difficult, particularly the first couple of years. This thread can be a place where we share advice about how to deal with things when they get particularly rough.
I didn’t work an office job for 2 years after PFS, but if you are struggling with work, some of the things I recommend if you are able.
- The biggest piece of advice I can give is if you are able, work around your symptoms. What I mean is plan on getting shit done at the times of day when your symptoms are at their best, if possible. That’s not always possible if you work a service or field job, but if you work an office job, speak to your boss about having a more flexible schedule. For example, my brain is at its peak from about 10am - 1pm, then 4pm - 8pm. I would try and fit my most intense work into those periods, and try to find low effort tasks I can coast through, or meetings, in that afternoon time period. It doesn’t always work but the payoff is worth it.
- Fit as much as you can into your ok days, but try to do at least something every day. This is like planning for a rainy day. You know you’re going to have days with PFS where you can barely get out of bed, so I like to get ahead as much as possible so those bad days don’t pile up and put me behind.
- If you can, talk to your boss about your symptoms. This isn’t appropriate for everyone, and you may just have a toxic work environment and shit boss. But if your boss is ok, tell them that you have bad days every now and then, and that you’ve been suffering from a rare disease. If you’ve been there for a while and it hasn’t affected you too much, it shouldn’t matter. Not appropriate everywhere though.
- On your bad days, just coast. There’s nothing wrong with that. If you have enough ok days, your bad days shouldn’t be as noticeable. Sometimes I used to just read news all day, or do very light touch work like responding to easy emails.
- If you can’t maintain a job in your current field, there is nothing wrong with finding a job you can maintain.
Most importantly, be kind to yourself.