Suddenly last week my disability payment was over $1,000 less than it had been the previous month. I knew I’d started working more hours recently but I didn’t think that I’d worked enough to cause a big drop. I’d also increased my tax withholdings since I’d owed taxes this year, again, not enough to cause a big drop. So I emailed my disability insurance and asked what caused the difference.

Turns out, to celebrate my one year anniversary of being on long term disability, they changed the formula for how they calculate my disability payments.

It used to be that disability paid 60% of my salary as of the date I went out on disability. I could earn additional money from my job by working part time and that didn’t impact my disability payment unless I earned more than 40% – makes sense I shouldn’t get paid more than 100%! They would have subtracted dollar for dollar any money I earned over 40% for the first year. This never happened. I’ve been working a couple hours a day on the days that I felt well enough and there was accessible work for me to do (primarily attending calls and answering questions on slack).

Now they’re deducting from my disability payment no matter how much I work. So I can earn more, but not as much more as last year. With this new system the total I earn per month between work and disability only increases $800 if I go from working 40 hours a month to 80 hours a month. My hourly rate is $44. 40*44=1760. I do not like this new math.

While this news has frustrating timing, it might help me not push too hard too fast. I’ve exited the initial stage of chronic illness where I spent all my time and energy going to doctors, collecting diagnoses, and trialing medications. The past month I’ve been relatively stable, able to stay home most days (traveling to appointments was physically and mentally draining), and begun focusing my attention on getting back to work. The past couple weeks I’ve been trying to figure out how to do editing tasks, when I’m still limited to my phone as the largest screen my eyes can handle. In the moment toggling and scrolling and memorizing and writing all feel fine. But based on my body battery scores, the nausea I feel when I take a break, and my lack of motivation to do anything but mindless scrolling on my evenings and weekends – my body isn’t ready for 4 hour work days.

My budget would really appreciate it if I could get back to earning the full salary I expected to have when I bought this condo, but there are other factors at play. And now that my disability insurance is decreasing the impact on my total income that working extra hours will have, I’m going to be even more careful about working within my energy envelope. Not the message disability insurance intended to send, I’m sure, but it’s the healthiest thing for me. And financially I’m privileged enough to be able to continue like this for a while. If I need to move to a more affordable area in the future, I’m ready to do that.

In the meantime I’m holding out hope that vision therapy will help. Last month they were accepting people added to the wait-list in November and I joined it in late January, so it’ll be a while until I can start, and many more months until we know if it will work. Until then, I’m going to try to be gentler with my straining eyeballs, inflamed brain, and poorly functioning mitochondria.