c. They feel powerless, as they realize that they cannot control other children’s insensitive stares and comments about their child’s condition. They grapple with trying to understand the senselessness of why their child had to be afflicted and seeing their child suffer through the question of “Why me?”
i. I know Dani has been asked about it and had to explain it to kids, some who have been mean. I hate that she gets shunned for the flakes or the patches. I hate that people think she is contagious. – Nancy ii. As a parent, I sometimes question myself as to why this would happen to her – Ladine iii. I worried that he will be picked on because of it - Lisa
d. Watching their child suffer and supporting them through this condition is draining …show more content…
They wish other people knew that this condition was an auto-immune disease, not something that is “dirty” or contagious. Caregivers believe that if others had this information, they would be more sympathetic and less hurtful to their children
i. Psoriasis is not contagious. I wish that people would not stare at my son.- Francis ii. I wish that other people knew that it is an auto immune disease and not a skin condition per se. I guess it 's different in that it 's the immune system that is in overdrive, and not that you 've caught something like a disease, or that you are dirty because you have this weird red patch, flaky and irritated. – Farah iii. I wish other people could recognize it, what it looks like, and that it is a simple, non-contagious skin condition. It is important to me for my daughter, because I do not want her to experience some of the embarrassing situations I have encountered. If they knew it and treated us the same as those without psoriasis or could just ignore the psoriasis, I would feel relief. I would feel we don 't have to have a sign saying, this is not dandruff, we are not dirty, yes we shower and yes we still have the right to wear black – Nancy
f. What they do to resolve these tensions
i. Downplay it… (Nancy and Mason’s mom said this) ii. Words of encouragement
i. I know Dani has been asked about it and had to explain it to kids, some who have been mean. I hate that she gets shunned for the flakes or the patches. I hate that people think she is contagious. – Nancy ii. As a parent, I sometimes question myself as to why this would happen to her – Ladine iii. I worried that he will be picked on because of it - Lisa
d. Watching their child suffer and supporting them through this condition is draining …show more content…
They wish other people knew that this condition was an auto-immune disease, not something that is “dirty” or contagious. Caregivers believe that if others had this information, they would be more sympathetic and less hurtful to their children
i. Psoriasis is not contagious. I wish that people would not stare at my son.- Francis ii. I wish that other people knew that it is an auto immune disease and not a skin condition per se. I guess it 's different in that it 's the immune system that is in overdrive, and not that you 've caught something like a disease, or that you are dirty because you have this weird red patch, flaky and irritated. – Farah iii. I wish other people could recognize it, what it looks like, and that it is a simple, non-contagious skin condition. It is important to me for my daughter, because I do not want her to experience some of the embarrassing situations I have encountered. If they knew it and treated us the same as those without psoriasis or could just ignore the psoriasis, I would feel relief. I would feel we don 't have to have a sign saying, this is not dandruff, we are not dirty, yes we shower and yes we still have the right to wear black – Nancy
f. What they do to resolve these tensions
i. Downplay it… (Nancy and Mason’s mom said this) ii. Words of encouragement