They treat RP like they treat autoimmune diseases. You also take predisone. These two things can bring about a bout of depression. It could be seasonal affect disorder which means the depression won't last long. Having to deal with RP would make anyone tired and grouchy and sad. You are doing a great job. There are medications out there for depression that really help. Good luck.My boyfriend has RP and I would like to know more about the emotional side of this illness?
I know you dont know me but I am in the same boat as you. I have been dating a guy for 4 months with Retinitis Pigmentosa. I dont know your age nor his. It is not easy but just being there for him will help. I have read 2 books that really help me understand alittle bit more. SlackJaw by Jim Knipfel and ******** by Ryan Knighton. Please read them. If you would like to talk I would be OK with that my yahoo IM name is svanrell I truely wish you the best
this is one womens view of her RP
Hi. I have RP also. I am 35 years old and was diagnosed when I was 22. I had always been nearsighted and struggled with imperfect vision, so when I got the diagnosis - it did not really have an immediate impact on me. Now, however, I am really struggling in so many ways. Of course, there is the obvious - not being able to drive anymore - but there are many other things that have changed for me as well. I feel isolated both physically and emotionally from the rest of the world and I find that it takes so much more effort and determination to do just the normal things. I suffer socially in most situations because I bump into things and people, I trip over people's children - hurting them, neglect to shake someones hand when it is held out for me (because I can't see it), and cannot often even follow the most mundane activities because visual cues usually guide most activities. I am exhausted from having to explainn all the time, and even though I don't want special attention - I worry that people see me as demanding it if I try to explain too much. As a result, I no longer feel like I am a part of the normal world and I often choose to remove myself from social situations. It is just exhausting, and most days, I don't have the strength to deal with it. Also related to the issue of feeling isolated is the way people relate to you once they know you can't see much in front of your nose. I think that although most people are very well intentioned, they cannot help but be over solicitous. They start treating you differently - like something fragile, broken, or they just act afraid to say or do the wrong thing. Sometimes I get the impression that some people are uncomfortable just to even be near me. Maybe they are afraid it is contagious. Another oddity I have found is that I have often felt the pressure to be a spokesperson for blind people - needing to explain to people that, yes, blind people can actually have regular jobs, be married, have children etc. Those close to me have reacted in differing ways. My husband is very loving and supportive but totally in denial and cannot seem to remember to stop trying to hand me things - holding them out for me to grab. Drives me nuts. To my kids, I am just mom, but I think it frightens them to see me become so dependent. They forget to warn me of stairs, doorways, cars, you name it when we are out together in unfamiliar places. As a result, I am always falling, crashing into things and hurting myself. Onlookers just think I must be mentally deficient or something. I have a sister in law who won't acknowledge my eye problem. She told me I don't want to hear about it - there must be something you can do! She thinks talking about it means I am whining about it. Yet another relative told me that I needed more faith in God to be cured and because I am still losing vision, my faith is not strong enough. Still other relatives open every conversation with How are your eyes? as if there is no more to me than my eye problem. I feel like saying, Fine, how are your bowels? I still work, but only marginally. Because we live in a small town, I am pretty much confined to working from home. I do some contracting work for a news monitoring company but it is very low paying work. In the past, I was a professional with a college degree - now I am barely able to make $400 per month. This is bad for the self esteem. The state I live in has special services for people who are visually impaired. They'll set you up with adaptive aids and teach you how to put raised stickers on your stove so you don't overheat the mashed potatoes, but there is nothing anywhere that can teach you how to be a blind person. From A-Z, I need to relearn absolutely everything and there is no resource for that. As far as how I am doing - I am angry, frustrated and feeling utterly isolated. There are days when I feel completely useless and there are days that I can laugh about it. The biggest challenge is that there is no one else with whom I can commiserate. There are those who care and want me to be happy, but what I long for is to find other people like me. I sometimes think it is much worse to be sighted and have it taken away than to be born blind. You know, there are organizations that advocate for blind and visually impaired people, but they seem to be more legislative in scope. While this is important, it's not what I feel like I need. I would welcome anyone who is in a similar situation to respond to this. I figure that I can't be the only person stuck in rural middle America dealing with this.
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