Table 3. Additional photos and corresponding quotes representing primary photovoice themes.

Theme	Other representative photos	Corresponding quotes
Well-being	Photo A	My husband and I had envisioned we'd be playing with grandchildren… but I was never able to carry… [The dogs] are affectionate, loyal, and they need us… they are sort of the light. (Participant 3)
The participant themselves	Photo B	This is me taking prednisone, and this has been a struggle for years, no matter what I do. Nothing helps, this picture I think would be the most frustrating for me of all the pictures that I sent… it has its own side effects and it affects everybody differently. For me, all the weight is around my stomach, so it’s a challenge because for my self-esteem, you know it makes you feel like crap sometimes, and you want to wear certain clothes and it’s hard to find stuff. That’s one of the biggest challenges I’ve had being on a medication that causes changes to your body. (Participant 7)
	Photo C	You can take warfarin, but you can also continue to inject with tinzaparin. You can't take any other oral anticoagulant because in clinical trials people like us have strokes, and so I take tinzaparin, I refuse to take warfarin… I've gotten better at my tinzaparin injections. I go slow, try to avoid blood vessels and apply pressure after. Bruises take a long time to heal, stain the skin, and aren't always avoidable, and after a year after and a half of injecting, 540 plus injections later, I still bruise, and I refuse to damage my front abdomen skin. But love handles are never pretty, anyway. (Participant 9)
Healthcare experiences	Photo D	I’ve been on the same medication for over 5 years, and one of my biggest fears right now is the side effects… I know it’s really bad for the eyes and I have been warned by my optometrist… that I should keep the eyes as healthy as possible. One of the ways that I’ve been doing this is I do a warm compress regularly, and then eye drops because I stare at the computer all the time and there’s no way for me to cut down on the medication. (Participant 2)
	Photo E	A lot of people just don’t understand the medication and appointment component that we deal with, you have to take a whole day off work, it’s an 8h infusion, and you’re stuck there, and it’s its own beast in itself that you need to deal with… it depends on how often you have these infusions, maybe you have multiple different medications that require infusions. (Participant 1)
Home	Photo F	It is very much an invisible illness. So my peers or my colleagues at work, people don’t know that I’m sick unless I say so. And it does impact what I’m able to do every day, so I do share that information. I found it’s helped me in my career being transparent with that… but I don’t know what my day is going to look like, or how my lupus is going to impact me… there’s still days where I get run down, even though I’m in remission where I can’t do a day to day task that a normal person can do so, the mountains to me kind of reflect this, you know, every single mountain is different and unique and has its own beauty with it. (Participant 8)
	Photo G	This one is symbolic to me. Believe it or not, this moose came through my yard last year… I was thinking that lupus is actually a lot like the moose, because it can do a lot of destruction but it can also hide really well. So that was the piece that really tied it together for me, you know it’s this big thing that we’re dealing with that can be very scary, and it can be very sudden if it comes up out of nowhere and can do a lot of damage, but it also can teach us a lot. (Participant 12)
	Photo H	The bird has been freed from the igloo. I have to, it’s just the responsibility to get moving… I do not have the abilities I once did, so I hold off on doing those activities that I love. Each year I hope I will have the chance to get back at it, each year will be better… I have to get back out for all the people and friends, and sister who donated a kidney to me, I have a responsibility… it’s not only for me, but for all those who have been there to help me. (Participant 3)
Other challenges	Photo I	This is from the insurance. Sometimes they approve it, sometimes they deny it. I don’t know what they want to see, they deny the claims. It’s stressful, too. (Participant 6)

Note: Potentially identifying components of the images have been removed to ensure participant anonymity is maintained.