How do I get support?
Getting and staying connected to people who actually understand is a really important part of caring for yourself when you have a condition affecting your life this much. Some diseases are served by nonprofits with support group networks (Sjogrens Syndrome and Stevens Johnson Syndrome, for example). If those are not available to you, social media is the next best thing.
It's hard, when you have painful eyes, to have to use the computer for support, so you have to be smart and use it sparingly, but keeping connected is important. No one understands this stuff the way fellow patients do. And if you are not fortunate enough to have people within your immediate reach that are supportive and empathetic even without having this experience, it's especially important to have the validation and encouragement of those who have been there.
Facebook is the easiest way to get connected to people who understand. Many people who do not use Facebook for anything else use it for the private support groups.
The main groups that the Dry Eye Zone hosts on Facebook are:
DryEyeTalk
My Big Fat Scleral Lens (we also have regional scleral lens groups)
PROSE Users
On our Library page you can also find a list of many Facebook and other groups that may be helpful, either on dry eye generally, or on specific diseases that may be relevant to you.
Facebook definitely doesn't suit everyone. If you want to be more anonymous, or you want to have more in-depth discussions, or you want to be able to search archives more easily, try DryEyeTalk.com. You will probably see much more in depth information and discussions here than anywhere else, although it doesn't have the instant gratification of Facebook groups.
If you're not comfortable with live interactions with others online, you might just want to start at dryeyestories.com. Consider sharing your own story anonymously. Search the other stories on keywords that overlap with your situation or needs.
As always, if you need help getting connected, please reach out to us here at the Dry Eye Zone.