Table 6.

Exemplars of perceptions related to disease induced fears.

“It’s everything you’ve got to do… I can’t get up off of some toilets (NUMBNESS)… is there a bathroom close enough I can get to (IRRITABLE BOWEL)? Am I going to have to stand for any length of time (FATIGUE)? Am I going to have to sit in a really hard chair for any period of time (PAIN AND NUMBNESS)? I mean it’s everything. Things that other people don’t even think about… It’s everything you’ve got to do. I can’t open a jar. I can’t open a bottle of pop. I can’t get up off some toilets. I’ve been stuck when we were traveling where I had to wait until my husband just said what’s taking her so long? And I screamed for him to come in and help me up. You’re very conscious of going up or down stair…because you can fall…” (White-FM)

“And there’s times when I just can’t even wrap my brains around anything… I can’t follow the train of concentration you know what I’m trying to say?.. And they kept giving me more and more pain medicine. It was so my brain function was not there. I couldn’t concentrate to do things. I couldn’t even concentrate to sit and read a journal...So it was getting to be fewer and fewer things that I got pleasure out of.” (White FM-RA)

“Yes I mean I have a lot of fears, I just have a lot of fears that you know I’m going to have to be in an assisted living or like that. That’s the way I feel because now I’m only 41 and I have to be helped you know a lot of days., Take doing simple things like taking a bath and washing my hair and I just hate to think what’s it’s going to be like when I get older” (Black –FM).

“I just I don't know what makes me have a lot of energy … it's hard to explain. Like I said I really don't make plans to do anything because I never know how I'm going to be…I guess it’s me. Until I started going to counseling and I guess I was really, I felt this helpless and hopeless and I was real depressed and I cried all the time.” (Black-FM)