Hi, it’s Linda (Sue calls me Lin). I’m hijacking Sue’s journal. I need to vent. Did the title grab you? It’s the first line to a joke that ends with the doctor saying “Then don’t do that!”
First, I do not have AMD. My dad had it so my risk is higher than ‘normal’ so I’m concerned about developing it in the future. I’m here because of and for Sue. And now for you.
I went for my annual eye exam with the doctor who has been doing mine for 25 years. He’s a great guy, a great doctor. He helped me through a tough time last year when I had cataract surgery & developed PVDs (Posterior Vitreous Detachment) in both eyes which is common. I also have some crazy thing on my corneas called map dot fingerprint dystrophy.
I’d gone to my appointment armed with a printed page from our website to give to him with the hope he’d eventually take a look at it, maybe even post it on their website. Granted, he was busy but in the past, even when he was busy, he took the time to talk to me. After the exam was over, after he told me that my macula was healthy, he asked how I was doing. I started “My friend of 40 years who is my age has AMD and a few months ago her vision became so bad that she had to quit working and driving.” He stopped me with “I don’t want to hear about that [AMD]..it scares me! My mother went blind from glaucoma from the shots!” I didn’t know what else to say but “I’m sorry about your mother’s vision.”
OK, I was not there to be checked or treated for AMD. He had other patients after me. I decided not to leave the website paper with him. Maybe if I didn’t know now what I do about the disease his reaction wouldn’t have bothered me but it did. I’d looked at his rack of brochures & the only one on macular degeneration was from the company that makes the AREDS/AREDS2 supplements that many doctors recommend (I have LOTS more about supplements in another post; I’m working on expanding it, actually). What’s up with that? Are there no other handouts? Since the supplement company is making money from what the doctor recommends, I’m sure they sent him the brochures for free.
As I drove home, I kept thinking about why his reaction bothered me so much. I figured it out. When I started to do research for Sue and for this website, I kept hearing about the visits people had with their eye doctors when they first got an AMD diagnosis. Here are just a few statements with a brief comment from me in brackets:
- “He told me that it would progress slowly, maybe take 10 years to get worse so don’t worry about it.” [every person’s case is different & there is no definite time frame.]
- “There are vitamins that you can get that are expensive but buy the cheaper ones.” [The subject of vitamins is more complicated than just going by price.]
- “Take these ‘eye vitamins’ and also take a senior formula multivitamin.” [TOO much of some vitamins/nutrients CAN be harmful!]
- “She didn’t tell me much, she just said that it’s an age thing.” [Even though AMD is more common as we age, many people get it when they are much younger; some people never get it.]
My eye doctor actually said to me today “you don’t have macular degeneration…yet.” Is he saying that I will eventually get it? I know better, thank goodness.
Basically, patients are getting little to no information and downright inaccurate information from their eye doctors. By navigating our website, you will find that we explain why each of statements are just not correct!
Which brings up the ‘head in the sand’ issue. My eye doctor voiced his fear of the disease & I believe that he was doing that to me as Linda, not to me as his patient. I hope that for his patients who DO have AMD, he is supportive & will refer them to someone who can educate them if he chooses not to do so. But to know that HE is afraid of AMD wasn’t very comforting.
At least in the US, people are coming out of their eye doctor’s office thinking:
- “I have nothing to worry about because my doctor said not to worry”
- “This is too scary, I’m not going to think about it”
- “I am so confused, where do I go to get more information?”
I’m guessing that many of you had that last one and that’s why you are here!
So tell us what YOU were told when you first got your diagnosis? Just leave a comment below.
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