Table 2.

Categories and example participant comments

Theme	Participant comments
Self‐care	‘Listening to my body and doing what I need. Asking for help when I need it’ (G. F.)
	‘Getting the sleep I need every night’ (L. L.)
Managing resources	‘Knowing your insurance takes a law degree’ (J. M.)
	‘Managing the cost of everything in general and trying to find affordable insurance’ (O. E.)
Mange relationships	‘Providing explanations to others for why I can't do what I used to be able to do’ (T. G)
	‘Explain side effects’ (T. G.)
	‘Making people believe migraines are a real thing and not just a simple headache’ (K. B.)
	‘Didn't want to share everything’ (B. L.)
Coordination	‘Keep track of treatments for all doctors… they don't have the same information’ (K. B.)
	‘Track symptoms (app not available) on spreadsheet’ (L. Z.)
Research and education	‘…Google everything, causes of illness, doctors to treat, medications, treatments, side effects for other medical procedures, multiple sites.’ (T. G)
	‘… Stopped reading everything, getting some crazy advice and conflicting advice’ (B. L.)
	‘Not all doctors agree with each other about what meds I should be taking, I like to ensure nothing is contraindicated’ (C. T.)