The hardship of working and the financial impact of POTS have emerged as strong themes in several of our past findings. Our findings about everyday tasks, for example, suggested that many POTS patients are challenged just by leaving the home for very long. We used the POTS Patient-Powered Survey to get a better picture of how POTS patients work or make a living. Below are the numbers and percentages of patients who gave each response.
Are you able to work?
Yes full-time, 82, green Yes part-time, 82, blue No, 253, red
For those who were able to work, we asked:
Do you have a POTS-friendly job?
Yes, 79, green No, 85, red
For those 79 patients who said their jobs were POTS-friendly, we list their jobs below, as described by them:
It appeared that working from home, and sitting jobs, got the higher ratings. Several people specifically mentioned that their jobs allowed them to eat and drink as needed, and to lay down occasionally.
For people who were not able to work, we asked:
Have you applied for disability?
Yes, 127, green No, 127, red
With half saying "no," I'm curious why they haven't applied. Getting disability for invisible illnesses is notoriously difficult, and the process is said to be grueling, so perhaps many patients were pessimistic that they would succeed. Gathering the proper paperwork and medical records can also take years, and finding a supportive doctor willing to participate in the process can also be difficult.
For the 127 patients who had applied for disability, we asked:
Was your disability application...
Approved, 73, green Denied, 29, red Still waiting, 25, blue
For those who were approved, we asked:
Did you use a lawyer for your disability application?
Yes, 28, green No, 45, red
Was your approval based on...
POTS, 35, green A different health issue, 30, blue Do not know, 7, red
Because POTS is entwined with so many other health issues, and has multiple underlying causes, it's probably tough to know whether disability status was granted for POTS alone.
How many times did you apply/appeal before getting approved?
1, 48, red 2, 11, red 3, 9, red 4, 1, red 5+, 1, red
This information makes me optimistic that POTS patients can sometimes get suitable work or disability benefits. What we don't know is what are the situations or plans for the 30% of POTS patients who cannot work, and who did not apply for disability. This also leaves 7% who report that they cannot work and were denied disability. They presumably have tough situations.
Overall, the breakdown of work and disability categories for POTS patients looked like this:
work full time, 82 work part time, 82 on disability, 73 denied disability, 29 waiting to hear, 24 never applied, 127
A final question asked about the overall financial effect of POTS, and below are the percentages of patients who gave each response.
It has no effect, 19 It's a minor nuisance, 54 It's a moderate challenge, 80 It's a big challenge, 93 It's a huge detriment, 148
These findings suggest that POTS adds financial stress, even before considering the expenses resulting from POTS, described here