Table 3

Quotes that illustrate the domains standing out/not fitting in, feelings about inner self and negative future

Standing out/not fitting in
Visible aspects/cosmesis“.the wobble, if that were removed or reduced it would make a massive difference. I'm often in situations where nobody need know or would know that I am visual impaired at all were it not for my nystagmus. But because it's there it makes a massive difference. To me emotionally, psychologically it makes a massive difference.” (Patient 6)
“Probably the fact that my eyes are wobbling cos I don't know any different to what I should be seeing because that's how was born. So if you know your eyes and head are wobbling and people are looking at you thinking why the bloody hell's your head wobbling then it's harder to accept.” (Patient 3).
“…you would have to sit with your head sort of like on a slant you know to try and get your vision and then people look at you so you feel a bit conscious there. So you'd find yourself straightening your head up and probably not being able to see erm very well but you'd just put up with it because you didn't want people to think you were weird or anything.” (Patient 5)
Eye contact“…what's that with your eyes why are they moving ….I don't tend to look at people in the eye or if I do it's sort of fleeting. Cos I still feel embarrassed about them seeing my eyes moving and thinking what what's she doing.” (Patient 11)
“…when it's pointed out to you time after time after time after time it does get to you…I actually avoid looking at people straight in the eye.” (Patient 14)
Comparisons to others“Just feeling different all the time. Just struggling to do things that everyone else can do straight the way. You always you always just feel that you're not as good as other people.” (Patient 3)
“… going to University it became more of a tiredness thing that was an issue rather than as a vision problem. Erm just not being able to fit in as much in a day as everyone else and then at work that is the main problem tiredness and how I have to work a shorter day and can't fit in as much in the evenings and stuff.” (Patient 13)
Others failure to recognise“And it's frustrating because just every now and again there's a little boy in me just pleads I want someone to understand me and I'd like to somebody actually understand how bad I'm feeling about it and because people can't, they can't appreciate.” (Patient 2)
“…it's more people's misunderstanding of the problem that is upsetting. It's not direct problems I face, it's trying to make other people understand those problems.” (Patient 13)
Feelings about inner self
Confidence and self-esteem“I'd be a lot more confident, more outgoing and have a different career…I think things would change significantly if I didn't have this condition”. (Patient 20)
“I feel that if I didn't have it I'd probably have a greater more confidence and I'd be able to live in a better way” (Patient 8)
“Again feeling of self-worth is involved here…huge problem with self-esteem, huge problem with not being able to bring in much money and a huge problem just trying to get through.” (Patient 2)
Sadness/distress“Depressed sometimes. Very depressed. You keep saying to yourself, oh make an effort, but you don't, you just don't.” (Patient 4)
“I used to feel ugly because people were so cruel at school cos children are and that sort of sticks with you throughout your life. Sometimes I feel a bit worthless, as though you're a nobody cos I'm a bit freaky and different.” (Patient 5)
“There was a time where it actually occurred to me that I should feel suicidal about it because it felt like it was difficult just to go through the day and put up with this.” (Patient 2)
Negative future
Abandoned/let down“Go away and forget about it yourself and that's basically what I've been told all my life by the professionals…it's always been a case of well what do you expect us to do? It's nystagmus there's nothing we can do about it. So perhaps they could be a little a bit more sympathetic and at least pretend to be doing something.” (Patient 16)
“I went for forty years and nobody touched me, nobody discussed it and yet it's on my medical records and yet nobody was out there for me. So there was no help.” (Patient 9)
Hopelessness“I was told that there was nothing available at all. There was never gonna be any treatment.” (Patient 3)
“I had an optician who when I was about 10 said to me…well young fellow someone has got to tell you and it might as well be me…you'll never have a driving license.” (Patient 12)
“I think the medical profession in general because it's been over 40years and I was never told anything, I had no hope.” (Patient 9)
Giving up/not attempting“Or playing sports you know your not going to hit it so why attempt playing cricket cos you could be stood there all day trying to hit the ball and you know your not gonna hit it cos your not gonna see it.” (Patient 7)
“Erm, cos I don't want to show myself up. Cos the first thing I'll say is I can't read it or I'll try and read it and get it wrong. And then they mock you because you've got it wrong. And then I then feel belittled that I couldn't see it and yet at the end of the day it's not my fault you know but.” (Patient 9)