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From: Antonia
Date: 11/27/02
Time: 8:08:23 AM
Remote Name: 66.119.34.39
Hi, Suzanne. Boy can I relate! I am 30 years old, was diagnosed with juvenile MD at age 28. I went in to see my optometrist for new glasses, and he promptly sent me to a specialist because he saw 'something in there, but I'm not sure what it is.' Well, a trip to a specialist, and a second opinion later, there I was getting PDT (photodynamic therapy-laser surgery with Visudyne) and a mind full of new terms to absorb. All this happened in a matter of two weeks, so yes, I was very confused as to what to tell my family and friends once the verdict was in. I was also in denial. As for what I told folks, I simply tell them that I have a condition that causes central vision loss. Most of the people I tell do in fact look it up on the internet after I explain to them what I have. Once they are educated about this disease, I find that they are very supportive. Oh, there have been a few well-meaning friends that have wanted to hold my arm while we walk down the street, for example, but I gently tell them that I appreciate the gesture, but I'm not that bad off, yet. I find that most people will look at you a little differently at first, but as long as you continue your normal routine in your life, and not let this thing get the best of you, they will not treat you any differently than those with no vision problems. That's where the denial subject comes in. I was very depressed at first about my diagnosis. My vision is, interestingly enough, pretty close to yours in numbers, but I do also have some squiggles and spots to deal with, mostly in my left eye. Once I realized that my world would not end because I can't see as well as I'd like, I got over myself and stopped feeling like a victim. These discussion boards have helped a lot. The men and women that post here have helped me more than they can imagine! Just knowing that they have productive, busy lives and still go thru life with vision loss is a great comfort and boost to me. If they can do it, so can I! My latest thing is to tell concerned friends, 'Well, I have a new spot that's waiting to break and bleed-it's kinda like a boil waiting to burst.' That's my simple explanation. If they are truly good folks, they will support you. If not, then at least you'll know which way the wind blows! I think you are doing the right thing by posting here, and getting feedback. Please email me if you ever need to talk! I'm at tootie2d@earthlink.net hugs, Antonia