Macular Degeneration Support Group

Macular degeneration is a medical condition where the light sensing cells in the macula malfunction and over time cease to work. According to the American Academy of Ophthalmology, it is the leading cause of central vision loss (blindness) in the United States today for those over the age of fifty.

0 Online
0 Online

Wet MD

Here's one for everyone: Do your friends act clueless when you tell them you have wet MD and have lost all or some of your sight? My friends have not been supportive. They act like it is no big deal, like I told them I scraped my elbow. Maybe it is because they can't see (no pun intended) what I am dealing with outright. It's not like I am in a wheelchair. But they are so interested in their own problems, which I find mundane by comparison. I am just really frustrated. I feel really alone in this, and I am very scared. All the things I thought were problems for me in the past just seem really stupid now. Therefore when others are complaining about their problems I think they're stupid compared to mine! I mean, one is upset because her daughter lied to her. I partially lost my sight in one eye, and there's a good chance it's not coming back. I think her problem isn't really that big of a deal! Now I feel like I can't depend on my friends for support. I feel hurt at their lack of reaction, and so, I am not talking to them about it anymore! Since I told them a month ago, not one has asked me how I am. Now I feel even more alone. I feel dumb that I even brought it up to anyone.I'm convinced that people who have dealt with it or are dealing with it are the only ones who could understand. StLucy

Replies

Barry5
Barry5

I get how some people view the situation after my time with it. You don't stumble around or look like Stevie Wonder, so they assume you're OK. My wife is continually asking for directions while driving or "what was that-ing" me about something on TV or a similar thing and she's fully aware of the condition. (One of my eyes is useless and the other is 1/3 of what it was.) What I'm attempting to do now is not talk about it to anyone, even though I can't work very effectively or drive. Sympathy won't help us anyway. Perhaps they don't want to coddle you. Maybe they don't understand. No one can see through another person's eyes in any event. People in our situation, like all others, need to do the best we can with what we have. I hope we both can do just that. These days it's not a really big deal. One can adapt and learn to deal with it.
deleted_user
deleted_user

I was diagnosed over 20 years ago with "dry MD", mine has become "wet" this year and they gave me 2 injections of Avastin and my sight has improved. However, I have been having a constant headache. I have had an MRI and the docs say that it isn't connected to the injections, but I have never had headaches before. Just wondered if anyone has suggested the Avastin for your wet MD or even if it is a good idea?
deleted_user
deleted_user

I have now been told by 3 of my retinal specialists that they use Avastin and Lucentis interchangably. Either one works equally well. Believe me, it's a good idea!!! It works. Best, St. Lucy
deleted_user
deleted_user

I know exactly what you are talking about. I work with people who even make fun of the fact that i can't see! I know they don't realize how devastating losing your vision is but you are right, it is best to talk to people who know exactly what you are going through. I just found out from Barry5 that wet md is even worse than I thought. I guess I have always tried to deny anything unpleasant in my life.
deleted_user
deleted_user

Hi, Monica. We all go into denial from time to time. As long as you are moving forward and realizing you need to face this problem head on, you have solved 1/2 of your problem already! Becoming educated about your diagnosis will help you feel more empowered and help you ask the right questions. Wet MD is nothing to play around with...tell me more about what your situation is.

I have learned to laugh to some extent about my situation - perhaps because it has improved -and I am very grateful for that. Tonight I went into spin class and smiled at this guy who I thought was my husband....but it wasn't! He was like, "Hi, there!" Then I realized it after my husband walked in. Whoops! Well, it is dark in there....:) StLucy