Explaining blindness is a struggle
Visual loss caused by Retinitis Pigmentosa (RP) obviously causes difficulty with practical activities in daily life, which we reported in a recent study (Latham et al., IOVS, 2015). However, loss of vision can also lead to significant challenges to emotional health, and we have just published a subsequent paper (Latham et al., PLOS ONE, 2015) to examine what aspects cause greatest difficulty for people with RP.
166 people with RP completed a questionnaire about their emotional health, and the two most difficult items were found to relate to communicating visual loss to other people (specifically, ‘dealing with misunderstandings from others because of your visual impairment’ and ‘explaining to others what you can and cannot see’). We suggest that partly this is because explaining vision loss is very difficult, but is also made more difficult if other people do not have a good understanding of vision loss – perhaps thinking that ‘blind’ means unable to see anything at all, or that only central vision is affected.
Other difficult tasks involved dealing with feelings of frustration and anger, stress and anxiety. There are programs available based on problem-solving approaches that address these topics, which have been shown to be helpful in some groups of older adults with macular degeneration, but we are not aware of any programs of this nature that have specifically targeted people with RP.
Another difficult task was ‘performing daily activities without suffering discomfort in the eyes, such as eyestrain’. Possibly this finding highlights the importance of regular eye examinations or low vision assessments to ensure that spectacles, tints, lighting and low vision aids provide as much support to residual vision as possible to allow tasks to be done as comfortably as possible.
A further key finding was that some groups expressed greater difficulty as a whole with the emotional health tasks, and this included people who use mobility aids, and women. We speculate in the paper as to why this might be, but it may be useful as an indication of who might be in greatest need of help with the emotional consequences of RP. We also found that the difficulty expressed did not depend on how long people has been visually impaired or the severity of visual loss, suggesting that people with RP might need help with the emotional consequences of visual loss at any point.
Many members of RP Fighting Blindness contributed to this research by answering the questionnaire, and we would like to thank you all for your time and enthusiasm for the project. We hope this study is useful and of interest to people with RP, and to those involved in supporting, caring and providing rehabilitation for people with RP.