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• Breaking the news (?)
• Posted: 2008-02-20 14:45:55 By Vicki T
• Hi everyone. This is the first time I have ever posted on this message board. However, I have been reading it for the past few weeks or so and have really gotten alot of enlightening and helpful information from it. Thank you, everyone, I appreciate it. I feel the need to find support from others right now and this is a great way to do that, I hope. Let me start off with a little background info on my situation; I have RP and I was told I had it when I was in high school. I'm in my "late 40's" now. My vision is less than 10 degrees visual field and 20/50 centrl acuity (with corrective lenses) The only people that are aware I have RP are my family and of course my husband.I have only been married almost 5 years and have no children of my own but do have grown step-children. My husband's family do not know I have RP, nor do my step-children. I have kept this a "secret" my entire life since I first found out. I know you're all probably wondering why I never told everyone. I guess when I first found out, I just thought if I never told anyone, it wouldn't be true. Sounds crazy, I know. Maybe I was just in denial and this was my way of handling the devistating news. Back then, in high school, I couldn't even bring myself to tell my best friend. The only problem I noticed with my vision was it was hard to see at night or in dim light. I was able to get a driver's license and lived a normal life and was able to hid my condition very well. It's only been over the past few years where I've come to realize that "someday" I'll have to let my friends and the rest of my husbands family know I have RP. Which brings me to my big question.... How do I do that?! I am trying to figure out how to tell them. It's so hard for me, I don't know why. It's like I've had this dark cloud hanging over my head since I've known about it. Almost feels like such a burden on my shoulders trying to keep this a secret for my entire adult life. Did any of you feel this way? Some of my close friends are aware I have poor night vision and some even joke about me having "tunnel vision" at times (of course unaware of how right they are). It's so frustrating for me! Sometimes I think if I just went ahead and told everyone I had RP, my life would be less stressful and I wouldn't have to keep trying to hiding the fact my vision is so poor. Mostly my peripheral/ visual field and night blindness, is what gives me the most difficulty. I'm sure people must suspect I don't see very well at times. There's been embarrassing moments where it's obvious I can't see things but I'll just laugh it off or ignore the fact. Know what I mean? Am I being ridiculous? Can anyone relate to what I'm going through? Please give me some advice on how to break the news to my loved ones and others. Thanks for taking the time to read this long message. Sorry, I guess I just needed to vent my feelings. Thanks, looking forward to your replies....Rose 3

• Re: Breaking the news (?)
• Posted: 2008-02-20 15:34:06 By mary o
• Hi Vicki,
  
  Boy can I relate to your post. I'm 55 and was diagnosed with rp when I was 39. Like you, I didn't tell anyone either. I was functioning fine and working as a dental hygienist. There was no need to tell anyone then because the only thing I had trouble with was my night vision. So I just kept it a "secret" like you. My close family knew because my mother also had it but no one else. I felt EXACTLY like you. I now have 10-15 degrees peripheral vision with 20/20 central acuity (with corrective lenses). My husband and I go to the lake on weekends and I needed a flashlight at night. At first I told my friends that I was nightblind...didn't mention rp. And they all seemed to accept that. Then about a year ago I almost had a bad wreck and had to quit driving to the lake by myself (which I did alot). My friends started to notice so at first I told them I had a visual impairment. They seemed to accept that at first but then started asking me...well, can't you fix it? Then I would explain about the rp, that my mother had it, that it was genetic, and they STILL didn't understand. I was constantly asked...surely there must be something you can do about it. Sometimes I just wanted to yell at them...don't you think I would have done something about it if there was a cure???? It was very frustrating. People have never heard of rp, don't know what it does to you, can't imagine what you see and what you don't see, and sometimes are just plain rude about it. However, after awhile they shut up about it. It was hard but I did feel like a weight was lifted off of my shoulders after I told everyone. I'm sure you will too when you tell people. Be prepared though for alot of blank stares and the comment...You have what?? After you get past this point, it is much easier. I didn't like the feeling I got when I thought I was hiding it from others. It is liberating to tell people. And you will be amazed at the empathy people will show you and how they are willing to help you. I'm sure you have the courage to tell people. When someone comments on your tunnel vision or jokes about it, use that time to tell them. It gets easier every time you tell someone. I know you can do it. You sound like a very strong person.

• Re: Re: Breaking the news (?)
• Posted: 2008-02-20 21:27:59 By Marisa P
• Well, ladies, my story is very much the same. I was diagnosed in my 30s, but didn't tell anyone outside of my family and my husband. I finally told my friends and my husband's family after I retired because some of them couldn't understand why I would retire two years ago at 51 having spent so much time and money getting my PhD. Some I told in person and I told others in writing simply because I didn't want to repeat myself over and over. Besides I felt that it would give me a chance to tell them what I had to say without them changing topic, etc. Some called me after getting the letter, others have not responded at all. I have gotten to the point that if I have problems in a doctor's office, etc., I just say that I have tunnel vision because if I say RP, they have no idea what I am talking about. I've had more than one person wanting to recommend the doctor who removed their cataracts or did lasik surgery on them so they could work on my RP :) Short of laughing, I just tell them that if there was a cure I would have been the first to jump. They just can't understand that it's genetic even if nobody else has it in the family.
  
  So, yes, you get emotional at first, but it gets better with time. Tell them and at least they'll understand why you bump into things...
  
  Marisa

• Re: Re: Re: Breaking the news (?)
• Posted: 2008-02-21 13:33:14 By Vicki T
• Hi Marisa,
  Thanks for your reply. Your idea of maybe writing a letter might be a better way to tell some of my friends. I am blessed with several very close girlfriends, some who I've known for 25-30 years. And that's why I hate keeping this from them, it seems dishonest. Of course some I will tell in person. If you don't mind me asking, what is your visual acuity and field vision right now? Mine is 20/50 and less than 10 degrees VF. You mentioned you retired at age 51. I am currently not working. I was working up until the first part of Jan. of this year. I recently applied for Social Security Disability benefits but haven't heard back from them yet. They told me it takes 3 to 6 months to reach a decision! Wow, that's a long time. If anyone can share some helpful info on this subject, I'd appreciate it. I have read alot of previous posts about SS on this message board which has been enlightening. (Thanks to all of you for those, by the way.) It's nice to get the support of others with RP. I don't feel so alone anymore! Thanks so much.
  Vicki T

• Re: Re: Re: Re: Breaking the news (?)
• Posted: 2008-02-21 20:03:15 By mary o
• Hi Vicki!
  
  It took me about 4 months to get my disability. Just filling out the application was extremely difficult for me. It was hard admitting the things you can't do anymore due to the rp. In retrospect, I think that was a first step in admitting to myself what I couldn't do anymore. So it will get better. Hang in there and good luck with your disability process.

• Re: Re: Breaking the news (?)
• Posted: 2008-02-21 10:30:26 By Vicki T
• Mary,
  Thank you so much for sharing your story and letting me know there are other people out there who felt like I do now. I appreciate your encouraging words. Now hopefully, when the right time comes along, I'll have the nerve to tell people about my RP. I guess what I'm dreading the most about it is them getting all emotional and breaking down and crying or giving me that "pity look", which I don't want because I know I'll fall apart and start crying too. I'm a "big bawl-baby" at times,lol. (you know the type...we cry at Hallmark commercials, sad movies, romantic movies, happy ones, etc.) I guess I'll just have to deal with it, whatever kind of reaction they might have. I read something on this message board about how to describe how a person with RP sees. It said to have people imagine looking through a couple of cardboard tubes to get the idea of what tunnel vision is like and to imagine going through your daily life that way. Pretty good idea. Then maybe I could add to that by letting them know how it takes longer to adjust to light differences (going from bright sunshine to indoors in a dimly lit room, especially) also, night blindness is an issue. I think the reason they might have a hard time understanding I have RP is due to the fact I seem like I see ok since I've kept it a secret all these years. Since the progression is different for everyone and unpredictable, if they ask me if I will go completely blind someday, I'm not sure how to answer that. I've read that it's rare in most cases but possible. Is that correct? I pray I will never lose my sight completely. But like you said, it'll feel liberating when I finally tell people. I'm looking foward to that part of it! So thanks again for your reply and support. I'll let you know what happens when I "break the news."
  Vicki T

• Re: Re: Re: Breaking the news (?)
• Posted: 2008-02-21 10:37:42 By mary o
• Hey Vicki,
  
  It's OK to cry. You are grieving the loss of your vision. If you were grieving the loss of a family member, wouldn't it be ok to cry? Like Marissa said, it WILL get better in time. I like her idea of writing a letter. Maybe that would work for you.

• Re: Re: Re: Re: Breaking the news (?)
• Posted: 2008-02-21 15:36:41 By Marisa P
• Vicki,
  
  My visual acuity is 20/30 corrected and my peripheral vision is between 10 and 15 degrees. Keep checking on the status of the SSDI application and before you know it you'll have that behind you.
  
  As Mary says, it's OK to cry and I don't know if we ever get past the grieving stage, we just learn to deal with it. Even then, we have our moments. We don't know what is ahead when it comes to RP, but does anyone else know what's ahead for them? So, there is no need to try to estimate if and when you might go blind. Chances are you will retain some useful vision.
  
  Everyone will react differently. Once you tell them, they'll start thinking and make sense of some things they never mentioned to you. For instance, I have a tendency to stay a few steps behind the people I am walking with, unless I am holding on to their arm, so that I can see them and don't bump to them. To me and probably to others with RP, it's normal but to others it can seem strange. Suddenly, they understood. Of course, others will say "that's too bad...you are so young." I simply tell them that I feel blessed to have what I have as there are so many worse off...Whether you do it in person or by letter, it's a shock to most people because they just don't know how to imagine someone who is not really blind and can see some things but not others.
  
  Good luck and keep us posted.
  
  Marisa

• Re: Re: Re: Re: Re: Breaking the news (?)
• Posted: 2008-02-21 16:33:28 By james n
• I'm also very frustrated with this disease, I pray everyday for this disease early in the morning
  3:00am.
  
  

• Re: Breaking the news (?)
• Posted: 2008-02-22 12:52:37 By Rashel K
• Mary, thanks so much for your post. I related so much. I have been lurking on this board since I was diagnosed a year ago (at age 42) but this is the first time I felt compelled to post. I guess thats part of the whole process of admitting you have this disease. I had not told anyone outside of my immediate family but lust recently had to tel my boss. The pitying is hard but the frustration of no one understanding that you cannot "fix it" is driving me crazy. Reading these posts and knowing there are others out there who are going thru the same thing really helps.

• Re: Breaking the news (?)
• Posted: 2008-02-22 22:22:36 By Cristy W
• I am 33 years old and I have been private about having rp. My family doesn't even understand what RP is, my sister just tells peoplle I am night blind. My mother went with me for my cataract surgery in December and when the doctor said something about RP she said what's RP. Sad thing was, he really never even explained it to her he acted like it wasn't a big deal. The hardest part for me is I am dating and get asked out alot but often will turn them down because I don't want to get into the awkward night time stuff. Like going to the movies or to a very dim lite restaurant. I often wonder if I should tell the guy upfront what I have rather than coming off as a picky, snobby person. I feel pressured that I should find someone before I get worse or now I find myself thinking would this person be able to handle my world. Also, struggle with if I should tell my job or wait...since I am not bad yet. I can definitely relate to you....

• Re: Re: Breaking the news (?)
• Posted: 2008-02-24 03:48:10 By Arturo G
• Hi, I'm 26, diagnosed three years ago with RP. A bummer really, but well what can you do! I kinda wish it came after 30 or 40 like for some of you, but I've mostly come to terms with it. Not with the disclosure though--it definitely can be difficult/frustrating to explain it to people and receive blank stares or raised eyebrows in return.
  
  Personally, I told my closest friends in person, while for the wider circle, I sent an e-mail update about my post-college life, including a whole section detailing RP. It helps too if you have trusty delegates (like my fiancee) to help explain it to mutual friends, too. That way I avoid some awkward conversations but am more at ease in carrying myself with those friends.
  
  But still, I do feel like I'm carrying a big secret around in my pocket. I just moved to a new city and started a new job... and have been playing the delicate game of turning down every invitation to happy hour (for we know it won't be very happy in there) and trying to avoid assignments that require driving (I'm an engineer). I fear of coming across as unfriendly and uninitiated, but I feel that's what I can do for now to make a living quietly and as normally as possible. Maybe one day I'll steel myself to break the news there, but probably not after wrecking my car on an assignment :)

• Re: Re: Re: Breaking the news (?)
• Posted: 2008-02-24 15:39:51 By Cristy W
• I know this is off the subject , but I saw where you mentioned that you are an engineer. You might want to check the US Department of Energy on USA Jobs, I know where I work they are hiring engineers as well as at other places. Might want to check it out.