These notes will help you as a friend of someone with RP, or as a family member, not quite sure how to react to the condition or how to help.
It is worth a few moments to remember that when your friend was diagnosed with RP and afterwards they may well have experienced or be experiencing emotions including shock, fear, anger, and confusion – even depression. Also, to think about the fact that RP is progressive and is a leading cause of untreatable sight loss in young people and those of working age, and to try, a little, to think about what your friend is facing.
Some people with RP will be very open about their condition, wishing to learn and talk as much as possible about it. However, this is not the case for everyone, others may retreat into themselves, not wishing to discuss it or sometimes even denying it is happening. Reactions vary greatly between people, and how someone deals with their own RP, and their friends and family in that context, is a very individual reaction.
However, what is certain is that you can help very significantly by taking a few simple actions:
- Remember that your friend faces a gradual loss of vision, perhaps over many years.
- Lack of night vision is often first, followed by gradual loss of peripheral vision. Bear this in mind when you are with your friend. For example, it may seem that they are being clumsy (knocking something over) or rude (ignoring someone not in their central vision), so be understanding and encourage others to be understanding too.
- Remember that learning to cope can be challenging. Everyone reaches some sort of acceptance, but it is very much in their own time.
- Learn a little about RP and try to understand some of the issues faced by someone who is faced with progressive sight loss.
- Do what you can to support your friend to remain independent and to live life to the full.
- Be informed by your friend – ask what you can do to help – but without interfering of course.
- Be willing to guide in the dark for example, and think about practical things like keeping floors clear and traffic or other hazards when you are together.
- DO listen, empathise, support and care.
- DON’T pity, over protect or make decisions on their behalf.
- Remember that RP, tragic though it is, does not rob someone of their individuality, or the ability to be successful in life, or to have fun with their friends and family.
Because RP is genetic, if you are a family member you may also have concerns about developing the condition yourself, or fears for your own children. A Genetic Counsellor can explain a great deal regarding family history and inheritance patterns which may alleviate those fears, and you can ask your GP to refer you.