Hello! I have Retinitis Pigmentosa, and have recently experienced some vision changes. It's been really hard on me, emotionally. I was wondering if anyone knows of a good place to start looking for support groups to join?
Real_Space_Captain10 points3y ago
Facebook has a ton but I usually avoid them, they are too depressing.
I honestly feel best on this thread. It is a good mix of questions, advice, venting and fun, where as some FB groups can just be people venting, which is important but also draining to read as someone who is loosing her eye sight (also RP!)
Notafakeinterpreter6 points3y ago
If you’re in NJ. NY, or CT, There’s a group based out of Rutgers University that is a peer-peer support group over the phone! They connect you with another individual who has a vision loss and they become your “mentor” and always call to check in based on how often you’d like to talk to them. It’s called Eye2Eye. Here’s the link: https://shp.rutgers.edu/psychiatric-rehabilitation/eye2eye/
FoursGirl2 points3y ago
Thank you for this!
Notafakeinterpreter2 points3y ago
You’re welcome!
DrillInstructorJan5 points3y ago
Hi there. I have a buddy who I usually meet up with quite often who has RP and went through some pretty fast changes, so I know where you're coming from. I'd definitely say hang out here on reddit because there's some pretty good real world stuff and I agree with Space Captain that some places can be really depressing. Some online groups are, and a lot of real world groups are, just full of people with vision problems. Going to some institutional environment and hanging out with them can be really incredibly depressing in a way that just living your life isn't. I think a lot of support groups are really not that great, especially ones here in the UK run by the big charities. Those people will not be there in your worst moments and it's important to be in the right frame of mind to deal with your own problems.
How depressing it gets is something you have to deal with, nobody can tell you differently, but I find that hard work distracts from being depressed, and I can guarantee it will be hard work if you want to go looking for it. And you should, because the more effort you put in, the better the results.
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[deleted]3 points3y ago
As some people said in here Facebook has some support groups, but I haven’t tried them so I can’t endorse them. For me I love watching YouTube and Molly Burke also has RP and her YouTube channel is about her journey with it. I find reddit to be the most helpful because people understand what you are going through and want to help you out
APJlovescats [OP]2 points3y ago
I was recently introduced to Molly Burke, and she's really changed my perspective on a lot of things. I love watching her videos!
[deleted]2 points3y ago
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vwlsmssng2 points3y ago
What country / state are you in? (Reddit is international).
Most large towns in the UK have a society for the visually impaired offering support and social activities.
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