Table 2

Themes and subthemes

Theme (n*)SubthemeSample quotations
Self-Consciousness (13)
  1. Feeling different/desire for normalcy

  2. Attempt to conceal (makeup, wig)

  3. Body image concerns

  4. Visibility of skin lesions

  • “I guess that I’m more or less like the problem child.”

  • “If I go to a hospital for an operation, they are going to want to take my wig off.”

  • “It looks like I have malaria.”

  • “I can’t wear shorts or short-sleeved shirts.”

Physical Signs/Symptoms (12)
  1. Symptoms of activity: redness, itch, pain, scale, alopecia, inflammation

  2. Symptoms of damage: dyspigmentation, scarring, irreversible hair loss

  • “…The redness, the blotches, sometimes it’s itchy.”

  • “The wounds are pretty bad scars.”

Fear of Disease Progression (11)
  1. Worry that new lesions will form

  2. Worry that existing lesions will worsen

  3. Worry about irreversible damage

  4. Avoidance and fear of sun in order to prevent further activity

  • “All these…all my red stuff. Like I’m afraid it’s going to get all over me.”

  • “[The scalp lesion] started out small and look at it now.”

  • “Irreversible hair loss on my scalp is one concern.”

  • “Not being able to go out in the sun and do anything without sunscreen.”

Functional Decline (9)
  1. Changes in social interactions

  2. Changes in activity/lifestyle

  • “It’s my go-to [reason] for why I’m usually not always in attendance or punctual.”

  • “I have a hard time sitting…your back always leans against the chair.”

Unwanted Attention (8)
  1. Others staring

  2. Questions and comments from others

  3. Rudeness from others

  • “People do look! The doctor will go ‘nobody looks.’ and I’m thinking, ‘you’re so full of it’ because people do look!”

  • “[Lupus] it makes me look so much darker and people keep asking me questions and it gets annoying repeating it every time.”

  • “l mean you understand, I understand, but a lot of people are you know, judgmental.”

Emotional Symptoms (8)
  1. Depression

  2. Helplessness against disease

  3. Feeling like a burden on loved ones

  • “I mean I have to deal with it every day. And I don’t like it. I hate it. It’s depressing. I don’t know another way to describe it. It’s very depressing.”

  • “You get defeated sometimes.”

  • “You’re always covering up and then, you know, when your skin got bad, I think it would be more troublesome for [their children] because it was embarrassing for them.”

  • *If a subject response qualified for categorisation under a given theme, the frequency was counted as ‘1’. Multiple complaints within one theme by the same subject were only counted once.