Table 3.
Emerging pattern | Patient quotes |
---|---|
Symptoms (fatigue) |
“It hasn’t really affected my life […] the only impact is that I get very tired all the time.” (UK patient) “Yes there are days when I’m too tired to physically make it into the office.” (UK patient) “I notice that I tire more from doing less.” (US patient) “I miss a lot of things my kids are into, because I am just too tired.” (US patient) “I didn’t get diagnosed until I stopped working. I was always tired which could have been a sign that I wasn’t aware of.” (UK patient) |
Social life |
“Before the diagnosis I ate what I wanted, partied and drank, so socially it’s been a massive change.” (UK patient) “After the diagnosis I felt really helpless, until I made the decision to change my eating habits. When I changed my eating habits I did not want to go out because I couldn’t eat like everybody else.” (US patient) |
Impact on work |
“I feel as if I have not the energy to take on a full-time job, but I don’t know whether this is due to my liver condition or my MS or just being a busy mom.” (UK patient) “I cannot do heavy labor anymore and had to be shifted to a back office position.” (US patient) “I notice that I get tired during the day even after having a full night’s sleep. It affects the tasks I can get done during the day.” (US patient) “I work for myself, so it does not impact my working life. I plan my schedule around doctor’s appointments.” (US patient) “There is no impact on my day to day job but when I had a flare-ups before diagnosis I thought it was flu and had time off as I felt awful.” (UK patient) |
MS multiple sclerosis, OBB online bulletin board