In the past, when I have waited a bit to tell a new friend, I always feel so relieved if they say something like, “Wow, I never would have known.”, as if I’ve somehow gotten away with something. Yet I cringe when I hear, “Yeah, I kind of wondered why you didn’t wave at me when I waved to you in the hallway or seemed kind of lost going into that restaurant,” or worse yet, “Oh, so-and-so already told me how you can’t drive and all about your vision.” as if they’re talking about something as insignificant as not having enough change at the pop machine. This may sound contradictory– wanting RP to be a non-issue while also not wanting it to be brought up so casually. I think it’s more that I feel it is my place to first bring it up to someone– not other people’s business to share when I’m not around.
I’m not sure why I think it should only be my place to tell people. It could be that I’m afraid incorrect information will be passed on (i.e. when a person I was talking to just thought it was something viral that would go away with antibiotics!)
I’m also not sure why I feel such a sense of shame and embarrassment about it– as if it’s anything I can even control. I remember walking into a restaurant about 10 years ago to use the bathroom, and since it was very dim, I circled the room several times before tripping over a stool and finally stumbling into the bathroom. A woman working at the restaurant came up to me and asked, “Young lady, have you been drinking?” I was mortified. One would think at that point I would simply explain that I’m visually impaired, right? But I was so taken aback and embarrassed that I simply found my way out of the restaurant as quickly as possible, got into the car where my husband, Ben, was waiting and began to sob. After I told Ben the story, we actually began to laugh, and I could definitely picture how a person stumbling around would appear wasted!
I do think that I have come a long way since that incident. When I went on a mission trip to Paraguay 4 years ago, for example, I told our team of people– most of them strangers– immediately. And I find myself speaking up even in stores now. Yet it still doesn’t feel natural to say.
Sometimes it feels more natural to just stretch the truth. When checking out at Trader Joe’s a few months ago, I couldn’t see the credit card screen to click “accept” or where to sign my name because the screen was really faded and dark. Thinking quickly, I said, “Oh gosh I’m not wearing my contacts today and can’t even see this screen!” The cashier was like, “Oh, that has totally happened to me– here, I’ll just put your pen on it for you.” Even the man in line behind me started talking about how blind he is without his contacts. I felt right at home and didn’t feel an ounce of embarrassment. But it wasn’t the truth!
Should I settle for telling white lies or hope that telling the complete truth will get eaier? Just the other day I was checking my 5-year-old into the doctor’s office and was asked to sign some papers. The receptionist saw me looking around for a pen and replied, “Oh, the pens are right there,” making a large sweeping motion with her hand, and walked away to make photocopies. I turned my head from side to side, scanning the counter, looking for this obviously-placed pen, but still did not see it. I looked down to ask my daughter to help me, but she was at the drinking fountain. I felt my face getting hot and my anxiety level rising before realizing that I was making myself frantic over a pen and needed to just ask for more help.
When the woman returned to the desk, I simply said, “I’m sorry I still don’t see the pens– I’m visually impaired.” She immediately handed me a pen and said, “wow, you’re doing pretty good then!” I know she meant it as a compliment, but for some reason i felt really emotional, as if I would start crying if she said another word to me. So I quickly sat down with Lucy and began reading a book to her, but then felt paranoid that the receptionist was watching us, wondering how I could read fine but couldn’t see a large container of pens. I, of course, started thinking about how I should have been more specific and just told her I didn’t have peripheral vision. Another tip that my counselor brought up is to have a specific, rehearsed phrase to say, pointing out that the more I say it, the more natural it will feel. I am willing to give it a try but am also curious how other people with RP handle this.
So all you RP’ers out there…. I know most of the comments thus far have been from our family and friends (thanks guys!) but if there’s anyone reading this who can relate, can you please comment on how you feel about telling people, particularly strangers, about your vision. Do you have a certain “line” or phrase that you tend to say? And does it get easier the more you do it?
Very interesting post. I also have the same problem. I am looking for that one phrase that describes how I see. I have gone into long rants…well, you see I have retinitis pigmentosa. I don’t have any peripheral vision and am night blind. Oh, yeah, and my depth perception is bad. Then I have told people I’m visually impaired which seems kinda snooty to me. Then I’ve told people that I don’t see well. That has worked best I guess. It’s simple and to the point. I’m 58, a retired dental hygienist, diagnosed since I was 40. So guess it doesn’t get easier. Your therapist was spot on. Sometimes I can’t talk about it due to the emotions. Maybe I haven’t accepted it?
Thanks for your response, Mary. It’s definitely a loss worth feeling emotional over– I heard once that going blind is listed as one of the top fears people have…. and here we all are – at all different points on the spectrum of acceptance. My counselor says that you do need to let that emotion out in order to drive and get past it. I met with her today, and the phrase of the session seemed to be “Adapt and Overcome”. Easier said than done, right?! I did end up coming up with a couple short phrases to say– something to the effect of “I’m having difficulty seeing that because I have vision loss. I have no peripheral vision and can only see something if it’s right in front of me.” I’m sure it will vary depending on the situation, but I’m going with something like that for now!
The truth will set you free. So true, but sometimes difficult for those of us with RP. I was diagnosed with RP at the age of 21, I am now 51. I have used a white cane for 17 years and now am the proud handler of a beautiful yellow Labrador retriever. Do you use a white cane for assistance or are you out there “faking” your way down the grocery aisle as I sometimes do? Using an assistive device or using sighted guide techniques is a good first step in letting people know that your are sight deprived without giving an explanation as to why you may appear to be stumbling around in the dark. It is also a sign that you are making progress in accepting the loss of your vision and your comfortableness with that loss. My theory is, it is better to use a white cane and stumble than not to use one and fall flat on my face. The last scenario is much more embarrassing to me not to mention painful. At least with a white cane, others visually see the reason for the stumble. I used to be embarrassed if I walked into something while using my cane, now I just laugh at myself and move on. I have also come to the conclusion that I really don’t care what other people think about me, I am who I am with or without RP (this also has taken many years of practice).
I guess that I am blessed in that I see my vision loss as an opportunity to educate others about the differences in degrees of vision loss; not all blind people are actually totally blind. Actually the percentage of totally blind people is small in comparison to other types of visual impairments that cause legal blindness. When my vision first started to get worse, I don’t believe I felt very blessed. I think I felt inferior and embarrassed.
The white cane or dog also does some of the explaining for me. I have found that most people when seeing me with my cane or dog are quick to offer help, i.e., hand me the pen, point to the line to sign until my pen touches the paper, offer assistance in finding an item. I also take the initiative by asking for a pen, locating an item, extending my hand first for the handshake, asking someone to point to the line, etc., instead of feeling embarrassed or frustrated. With the use of an assistive device, an excuse does not need to be formulated, a large explanation does not need to be given. We formulate excuses and/or explanations when we feel a sense of guilt or shame. Those of us who have RP have no reason to feel guilt or shame. Does a diabetic feel guilt or shame because they are diabetic? I doubt it. It is what it is.
The only time I offer a full explanation of my sight loss is when someone asks me about my cane or dog. When I’m with my guide dog, I’m usually asked if I am training the dog. My reply, “No, he is actually mine. I am legally blind”. Their response, “Really, I would never have guessed because you do so well”. I smile and say thank you, and keep on walking. I believe there is misconception about folks who are blind. When a person says this to me, it tells me that they think they are complimenting me. They don’t know any better, they are naive about blindness, they have probably never been around someone with a large amount of vision loss. If someone wants to know more about RP, I explain that my retina cells are slowly dying leading to lack of peripheral vision. It is like looking through the wrong end of binoculars or through the end of a toilet paper roll or down a tunnel.
I am here to tell you, though, that this comes from many years of practice and streamlining my story. I found that the more information I give, the more sorrow the other person expresses, which can become uncomfortable. Have you ever heard the phrase, “Keep it simple, stupid”? Finding a short and to the point explanation will greatly benefit your mental health.
Every day I wake up I have two choices: to sit in a puddle of fear and tears, or to live my life to the best of my ability. I choose the latter. I am blessed to hear the walls, the subtlety in a concert piece or a bird’s song, I am blessed to smell the roses, and I am blessed to be able to walk down the street. For me, there are worse things than being blind. A friend (who is totally blind and has diabetic neuropathy) once said, “I’m the lucky one, I see more than the fully sighted person – they are the disabled”.
My family members are in denial – they always will be in denial. They don’t want to hear about my vision loss because then they would have to face something that they are unable to fix for me; or maybe they fear that this could happen to them too. Sometimes the person who is experiencing the loss copes a lot better than the person watching.
Retinitis Pigmentosa is not who you are, it is a small part of you and in a way it can strengthen you like nothing else .
I apologize for the length of this reply. I understand your pain and I hope that I have given you a few tools and things to think about that took me a long time to learn. Kind of like Cliff Notes for living with RP.
Best wishes to you, and most importantly – take care of you.
P.S. Orientation and mobility training has helped me immensely in my quest for independence.
Wow, thanks Shawn for your thorough “cliff notes” and encouragement! The topic of cane use– especially as a way to “tell” strangers on the street that you have less vision than them, is an interesting one. I used to be involved in the National Federation of the Blind, and they were big on the cane for primarily this purpose.
I have actually gone through mobility training and used to use my cane on occasion, particularly at night (though I prefer to just use my husband and friends as canes when we’re out at night!) I always felt pretty awkward using it, however, because I do have useable central vision. I guess for me it would feel like I’m “cheating” if I walk into a restaurant with a cane but then start reading the menu, as if someone will come up and ask me if I’m faking it or something! It’s interesting that we’ve both been dealing with RP for around the same number of years (diagnosed almost 30 years ago like you), but are clearly at different acceptance points with it– maybe growing up w/ an impairment as a kid has made me more self-conscious about it or something (all those years of feeling “different” as a child). Whatever the reason, I guess I’m just not “there” yet.
Another friend who has RP pointed out that she doesn’t necessarily want a line full of strangers in the grocery store to know she’s going blind. It makes me think about how this is a real loss that is very personal for us, and in many ways speaking about it aloud to strangers or using a cane feels like sharing our personal struggles with the world when we’re still trying to cope with it ourselves.
I’m sorry about your family’s reactions– I cannot imagine that, as we have been blessed by such a supportive family. I hope that in time their fear will be replaced by acceptance, as your’s has. I hope that for all of us. Many thanks to you for your open, honest and hopeful comments.
Awesome post Joy! I can realte to all those things in a big way. I’m 35 and have 2 kids and still in a little bit of denial with my RP, simply because I want to be “normal”, so therefore I go through life as if I do not have it, but I’m reminded pretty quick that I’m losing my vision. A few nights ago I went to Wlagreens to get some Advil and wrote a check, I used a pen that i had in my purse, when I was done the young cashier said to me “That is your pen”. For the life of me I could not see it on the counter….I was mortified due to the fact that there where 2 checkout lanes side by side and at least 8 people waiting….so she ended up handing it to me with a puzzled look on her face not to mention everyone looking at me like I was crazy….Needless to say the whole ordeal lasted maybe 1 minute, but what do you say? Do i tell a line of stranger that I’m losing my sight and since the pen was white and on a white counter I was not going to see it, do I go into a RP speech, and explain that I do not see curbs and steps as well?? I guess I feel like I can tell people in a one and one situation but it is awkward when you are in public…..I do not think that it means that I’m not daling with it….I think it means that I’m trying hard to not let it win. I’m so glad I’m not alone. That is another awesome blog! 🙂
Hi Amy! Thanks for your comment. I can totally relate to your story about Walgreens. I had a similar thing happen at yoga last night – the teacher wanted us to fold our blankets this “certain” way, but b/c it was dark in the room and she was doing it quickly, I couldn’t fold my blanket like she had demonstrated. There were about 12 other people in class who immediately followed her instructions perfectly, and then the teacher singled me out and seemed irritated that I was being such a poor student. I didn’t want to start a big speech about RP in the middle of yoga class – I felt so awkward! Like yours, the whole ordeal was only a few minutes long, and she ended up folding my blanket for me and making a comment about how “some people are just spatially challenged”. I agree with your comment about not letting it win, and it helps to hear stories similar to my own experiences. Thanks again for following our blog!
wow, Shawn. You took so many of the words right out of my mouth. I was diagnosed at 23 (at 25 degrees vision) and am now 58 (at 10 degrees vision). I also have 85db hearing loss (although they can’t verify it’s Ushers). Anyway, my point is, I went years and years with the same problem with embarrassment and probably shame as well and didn’t tell people I had a vision problem. When it got worse and it became more obvious, it only made me look stupid to ‘play’ like I was sighted. I finally gave in and got mobility training and then a dog who I’ve only had for 10 months. But the difference has been astounding. Before, when I couldn’t find a pen or whatever and felt everyone was staring at me like I was an idiot but since I use either a cane or a dog, people are so much more helpful. I don’t even have to ask them to show me where the pens are — most make it extremely easy for me and even put their finger where I’m to sign. And, like Shawn, I’ve had a lot of people ask me if I’m training the dog since I’m doing all the normal things sighted people do. My response is usually ‘I have tunnel vision and she helps me see obstacles in the way.’ I’ve found most people understand tunnel vision pretty well and if they want more info, I’ll gladly provide it but I’m not the type of person to want to talk about myself much. And, like Shawn, my family didn’t really acknowledge my vision loss until I got a dog. When I was first going to get a cane, I told my mom and her response “You don’t need a cane!!! We an help you get around.” Another time she said “But if you use a cane, everyone will think you’re blind.” Well, yeah, mom, and they’d be correct. lol I think I still embarrass her a bit by not being ‘perfect’ but hey, that’s her problem, not mine. Anyway, I’m rambling now but I think most of us RPers go through most of the same stages of feeling like a fraud using a cane when we can still see. But, Shawn states it very well. We do have a choice on how we let RP ‘define’ us. We’re the same people visually impaired as we were sighted–we just see things differently.