Finding Support When You Need It
Last updated: December 2020
Remember when you were first diagnosed with AMD? Of course you do, it was frightening, confusing and depressing! I for one, wish my eye doctors would have been more compassionate and spent more time educating me on what to expect.
What happened when you were first diagnosed with AMD?
Just like I said above, I was scared, confused, and totally ignorant of what my future held.
In my opinion, the medical profession needs to do a better job and use more empathy, when they deliver a life-altering diagnosis. Many of us were floundering and panicking when we first found out we had AMD. In my case very little information was provided on what my visual future held. My RS at the time merely told me he was going to begin a course of injections for my wet AMD eye.
What happened right after my initial diagnosis?
Much gnashing of teeth, hand wringing, and Google searching happened. If you ever want to really scare yourself, just Google your malady, and your imagination and gloom will really kick in! Whew! What an emotional and awful time that was, and it didn’t have to be that way either.
What I wish had happened immediately following my AMD diagnosis.
First of all, the eye docs should be consoling, compassionate, and caring to a much larger degree. They should educate us on what to expect and guide us into some sort of support network. I think my current RS (whom I love) would actually do that, but sadly my initial eye docs did not.
Support is essential for the newly diagnosed
I’m now 72 years old, I was diagnosed some 9 years ago. Years elapsed before I found support groups online, like the one we have here. And it was like a breath of fresh air to find our site and participate in it.
- We can read others' stories.
- Post questions and have them answered.
- We can offer advice and guidance to our peers who are struggling.
- Find out about the latest treatment innovations.
- And learn from the experiences of others.
You’re here, so you already know most of the above-listed perks of belonging to MacularDegeneration.net.
This site also has an incredible editorial staff and support network from the parent company, Health Union, LLC. The staff behind the scenes is very knowledgeable and professional.
They, along with the advocates and moderators of this wonderful site, keep us “on course” and filter any content that is not based on science and fact. All that said, there is plenty of emotional support and guidance offered to you, our members.
Here’s more info on all the available health communities that are currently available under the Health Union umbrella:
Today, Health Union’s portfolio of patient communities includes Migraine.com, RheumatoidArthritis.net, Type2Diabetes.com, ParkinsonsDisease.net, AlzheimersDisease.net, H-I-V.net, Heart-Failure.net, Sleep-Disorders.net, and more!
We also own URLs and plan future patient communities every year. Learn about Our Communities.
I included the information about a few of the HU communities, in case you ever need it. Having macular degeneration is bad enough and I hope you don’t need to join any other communities! But if you do, know that there are communities available for you. I wish us all well on our health journey.
Do you find that fear interferes with your ability to regularly go to eye specialist appointments?