Table 11 Quotes relating to the impact of AHP

Ability to work

 “[For] 18 months I didn’t work at all…I was a sick person at home on benefits.” (Patient A)

 “I can’t study when I’m having an attack. I can’t even feed myself, let alone go to the [university] or do the work or read.” (Patient H)

 “[I] used to do quite a physical job. [Now] I can’t do retail; I wouldn’t be able to stand for that long really. I wouldn’t be able to do an eight-hour shift…I wouldn’t be able to lift up something heavy at all. 1) Because it hurts and 2) I’m just generally not that strong. So, I do an office job, so I sit behind a computer and take calls and do admin stuff for the council.” (Patient C)

Financial impact

 “I completely lost my financial independence.” (Patient E)

 “I can’t pay my bills.” (Patient C)

 “[I] had to sell the house. Spend my savings.” (Patient G)

Ability to socialize

 “It doesn’t do anything for your social opinion of yourself…I am quite proud to be a nurse in social situations and I am a nurse and I work full time and I pay tax. You know I am an upstanding citizen, when you’re on benefits in social situations it can be embarrassing.” (Patient A)

“It does mean that whenever the pain hits, I have to drop everything I do. Cancel all my plans, no matter what they are; cancel weddings, cancel holidays, everything basically…” (Patient E)

 “Before porphyria came and reared up…[I] had a normal life. Had a job, had a social life, then porphyria came along, I can’t work anymore, I’m classed as disabled. And I can’t go out and socialise as much as I could do, so it’s changed my life, it’s turned my world upside down.” (Patient J)

Impact on relationships

 “More [of] a doctor and a nurse than I am a husband…” (Caregiver B)

 “I’ve not had a partner since being ill. But being ill is probably a reason why I’ve not got a partner…You’re this sick person who is on benefits, doesn’t have any money, doesn’t have any prospects, you don’t feel very attractive.” (Patient A)

Ability to carry out personal and household tasks

 “If I’ve just come out of hospital and I can’t walk and I’m on crutches or I’m in a wheelchair, then obviously, getting in and out of a bath to have a shower or to just make myself a dinner or make myself a cup of tea isn’t easy because my house isn’t adapted for that. […] eventually when things get worse and I won’t be able to recover, then obviously my house, my flat will have to be adapted.” (Patient C)

 “[I] buy food, make dinner, kind of what I describe as the household chores, right. And [wife] might spend an entire day on the sofa. Not because, she doesn’t [want to] help me, but because she’s in too much pain or is just too fatigue[d].” (Caregiver C)

Impact on psychological wellbeing

 “I suffer with hallucinations, confusion, I don’t really know what’s going on, I don’t really know where I am, I’m not safe to be alone.” (Patient C)

 “I’m only 27 but I feel like I’m 50 something […] sometimes I’ve told my mum before, I don’t even want to be here anymore. But I think like that when I’m in a crisis more. When I’m not, when I’m okay, I feel okay, but it’s just hard to live with. I said to my mum that I think if I didn’t have the children, I don’t think I could, I would live like this, with putting up with the treatment and everything else that [is] involved.” (Patient H)