Top 10 Stargardts frustrations?
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I have now lived with having Stargardt’s Disease for about 44 years! Those of us with Stargardt’s have differing visual acuities and I have no idea of what mine is right now, but maybe we share the same visual frustrations? The other day I was contemplating my top 10 frustrations about having limited vision because of Stargardts. I appreciate that many of these are also frustrations for those who have limited vision because of some other eye problem. This is the list that I came up with but I found it too hard to rank them from 1 to 10.

Because of my limited vision due to Stargardt’s, I am NOT able:
- to have eye contact with people (unless they are REALLY close!)
- to drive
- to recognise people that pass by in the street
- to “walk tall with confidence”, always fearful of unseen obstacles in my way!
- to “see” what people say. One has to listen more intently as the added “extra” of being able to see what people say across a table/room does not exist.
- to feel totally confortable about international travel by myself. Airports are a very stressful place for me when travelling alone!
- to fully enjoy watching or participating in any ball sports
- to read a book (but have adjusted to listening to books)
- to see bus numbers, signs for toilets, street names, house numbers, destination boards at stations etc.
- to see/read price tags on clothes, food etc.
The last two frustrations are lessened by the use of various magnifiers … but are still frustrations!

With regard to the first frustration on the list (I am NOT able to have eye contact with people), when I talk to a person across the table/room I obviously try to have eye contact and I think I am looking directly at them but, in fact, I am using my peripheral vision so therefore NOT looking directly at them – and they in turn look BEHIND them to see WHO I am talking to! This is a pure Stargardts frustration due to my obscured/loss of central vision. This really gets me down at times and tends to make me avoid actually trying to do this …. but, as everyone knows, one can be judged as being offish, shy, hiding something, impolite and/or insecure if you avoid eye contact with people.

Other frustrations include:
- when people look in your direction, do not use your name and talk to you but you do not see that they are in fact looking at you hence talking to you
- difficulty going down stairs (edges disappear and they seem to merge into a slope!)
- not being able to see the face hence expressions of an actor/actress at a live theatre show
- no longer able to see/read music (sang in choirs/played the flute in my youth)
- not being able to use just any computer (I must have Zoom Text)
- smart phones are nothing for me

So, could you relate to any or all of these? Do you have other frustrations due to Stargardts?

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10 Responses to Top 10 Stargardts frustrations?

  1. jalip says:

    hey everyone
    i really appreciate this work by the admin to gather all of us who are suffering from this disese.All the frustation u have mentioned above, i am expreiencing it on dealy basis becuase i am doing M,phil and i have to deal with my classmate, supervisor and everyperson i realy met.They cannot understand my problem,The most frustating one is that on ur friend is looking at u and u passed by him and he then call ur name and they feel that i am arogant.

  2. Lefty says:

    Indeed, there are many frustrating things we have to cope with having Stargardt’s Disease. Especially dealing with our friends and family and communicating what we have to deal with. I say this because on a daily basis I can be out shopping in our local grocery store and a friend will say, “hi”. however, it takes me some time to recognize the voice and put a face to it, as I can’t see their face. This situation can probably be similiar for most of you.
    It certianly takes time for all our friends and family to understand the full scope of what we have to cope with having Stargardt’s. I have had many people ask questions about my disease and its progression, how I cope, etc. I finally decided to build a web site/blog in order to provide them with more information, and allow me to communicate with others coping with Stargardt’s Disease. Now, many friends have wnt to the web site and have a better understanding of what we with Stargart’s go through. I recently was shopping and a person said hello and provided me with her name at the same time, as she knew my situation. It all comes dowm to communicating and educating others about our frustrations.
    Its nice to know that their is a web site dedicated to Stargardt’s where we can all communicate about things relevent to our situation. I would like to share more and its all on my web site if anyone is interested in going there and sharing more themselves, then please do so. visit: http://www.vibebc.com
    Thank you all for your sharing your stories on Stargardt’s.Net!

  3. valerie says:

    I agree I have had those frustrations as well. What is most frustrating to me is talking to people , whether it is walking into a room and not recognizing people, or missing non verbal communication, it gives me a lot of anxiety, although I have gotten more comfortable with it my socially awkward moments. I just tell myself I’m doing the best I can and besides why worry about something that is out of my control.

    • midge10 says:

      Valerie, I totally agree with, applaud and adopt your philosophy – we are indeed doing the best we can and should not worry about something that is out of our control :)

  4. Bela says:

    All of those and not being able to see my son play football even though I take him each week!
    Very frustrating

  5. Christine says:

    I was only recently diagnosed at 54, but have experienced symptoms for many years. Making eye contact is not possible, but it is humorous. I find myself fascinated during conversations because I feel like I’m talking to a Picasso painting. One eye here, the other gone, half a nose, etc. I find loss of independence from not being able to drive the worst. The worst things for me are menus and directions on labels. I fell down a huge flight of stairs the other day and my legs look like a 6 year old boy’s from walking into things. People tell me that I amaze them because I deal with Startardt’s so well. My answer is that my mom died at 52 and my dad at 59 from cancer, so I keep things in perspective. I find the best thing to do is ask for help, keep a sense of humor and buy cheap glassware.

  6. Caroline says:

    I have had star gardens disease for 32 years, I am a senior physiotherapist that takes constant continued professional developement which is extremely difficult, as the medical profession is the most unsympathetic area to work in believe it or not. I very rarely tell anyone unless I need to as people don’t understand and assume you can’t do your job well enough. The number of times
    I have the mickey taken out of me by staff and patients as I need to sit close to PCs and to writing notes.
    Studying can be very tiring and frustrating I do use some magnifiers but everything takes so long, I would love to pick up a book or article and just read it with not problems, this
    I think is the main thing I hate about this condition.

  7. Mike says:

    All those things are frustrating. Especially when people cannot tell where you are looking when you talk to them and they start looking behind themselves or looking around to try to figure out where you are looking. In fact, one time I was having conversation with a guy that worked for me and he yelled “look at me when I talk to you” . I jumped out from behind my desk and came very close to punching him. Do you think I was maybe a bit too frustrated? Oh well. He never talked to me like that again.

  8. chuck says:

    hello , i have all the same problems that you mention , my vision is 20/200 which is right at thelegally blind marker , even though i have stargartd’s i feel a little lucky that my sight hasen’t degressed too much since i was 16, i’m now 60 , here is a few things i have learned to do over the years. i learned around the age of 23 that when i thought i was looking at someone , iwasn’t looking at them , i8was talking to someone in my kitchen , and they said after looking behind them what the heck are you looking at , it was then i realized that i was using the bottomhalf of my eye to see , so after that when talking to someone i would put my blind spot on their face , and it would appear to them you are looking at tham , but look awaw every so often and use the sight you have so you can see their expression and so it dosen’t seem you are stareing a hole in them ,,,, it takes practice and you won’t get right all the time. about people thinking you are a snob or otherwise , when someone says to you i saw you the other day and you did not acknolege me , this always happens , i tell folk’s you need to call my name out if you want mt attetion the thing about stargartd’s for me is you tell people which it is on a need to know basis that your sight is bad , they want to tell you to get glasses , when you try to explain it to them most of the time they get bored and stop listening or they say , i know what you mean , no they don’t . i could go on for qa a long long long time about my experances we could talk more at candb250@yahoo.com got blisters on my fingers (john lennon)