As a person who is currently going blind, I would suggest that your partner seek a professional to talk to; perhaps a counselor that has experience with those with disabilities. She may be having a difficult time coming to terms with her vision loss, and a professional can help her work through her feelings and concerns. It would also give her a place to openly discuss her fears and not have to constantly unload them on you. Hopefully she is receptive and open to this idea. Good luck and best wishes to the both of you.
SwedishViking352 points6y ago
She has already been to counseling but decided that it really didn't help her. She stopped going after a couple of months.
meeow_me10 points6y ago
It might be time she make some blind friends. Of course she should continue to make sighted friends but it could empower her to know that there are thousands of blind people out there living fulfilling lives. I recommend the National Federation of the Blind (if in US). They have local chapters and a national convention every year. They are very much about empowering yourself as a blind person and not having your disease define you. My boyfriend is blind and I can always see a noticeable difference in him after he spends some time around other blind people, especially ones who are conquering life.
SwedishViking353 points6y ago
That's a good idea and she's seeking contact with other blind people. I'm all for this ! But she has stopped trying to make sighted friends as in her mind "they will never understand her struggle".
As a sighted person I understand why my friends and other people shy away from her. As soon as they meet her it all becomes about her disease. It makes me so upset because there is so MUCH more to her than that.
meeow_me3 points6y ago
Have you talked to her about this? She may need a blunt conversation that her constant focus on her disease is making her difficult to be around and it sounds like it is making her miserable. This isn't just a blind issue either. When people face a hardship or a disease, it is a choice whether they let it define them. She may need help realizing that. Perhaps you could find an audiobook about overcoming a disease and living a fulfilling life or a book about thinking positive.
cherry_vamp5 points6y ago
I have RP and I remember how devastating and terrifying it was when I found out... I was 21 years old newly engaged and have my whole life Ahead of me... Flash forward 23 years and I have two amazing children and a wonderful man who loves me tons of friends that surround me... yes I had struggles but I've had many many more triumphs... I would be more than happy to talk to her or you if you would like to message me
snow6714 points6y ago
I went through similar feelings when I passed the point where I could no longer drive or read from a book. What helped me: therapy, reading about others who overcame their disabilities, and the company of blind friends. And maybe antidepressants. What didn't help: being surrounded by loved ones who felt sorry for me and insisted on helping me with things I should have been learning to do on my own. It may be different for her but I recommend trying what everyone else has suggested and on top of that, maybe some tough love. She can overcome this. I will be hoping for the best for both of you.
SwedishViking353 points6y ago
It's hard for me to do tough love. I help her whenever she wants me to help her. I can't make a distinction as to what she should do on her own or what she always will need help with.
I think she is very scared of doing things on her own. She's afraid of going out because she will get lost. Even though I'll tell her that just take her phone, call me and I'll pick her up. In that sense I'm trying to push for her independence.
She only found out that she had RP 2 years ago. Sure, her vision has deteriorated since then. Before she knew of her illness she wasn't defined by it. She did all sort of stuff. When she got her diagnose - she stopped trying. So maybe she needs to live like a blind person ? She should stop trying to do things like a sighted person ?
snow6711 points6y ago
What is she having trouble doing? Hopefully not street racing
SwedishViking354 points6y ago
I bet if she had 20/20 vision she would do street racing :) She has problems with everything.
I introduce her to people, she has a hard time seeing them when it's dark. She is scared of taking the train alone, afraid of getting off at the wrong stop. One time she was helping my friends in a coffee bar (doing the dishes). At some point a customer asked her if she could take his order - she couldn't help him. Now she's scared of going back there.
But it's not actual issues for anyone else. I'll pick her up 24/7 if she gets lost. Nobody cares if she couldn't help that one customer at the coffee bar, they were so grateful she came to help with the dishes. All my friends know that she doesn't see very well, at parties it's only an issue if a random dude starts trying to talk to her. It happens, but it's no big deal to anyone else.
snow6712 points6y ago
Maybe something like a small, fun class (cooking?) could help with her self confidence. Or walk or take the bus to the same coffee shop once a week until she is confident enough to make the journey on her own. I'm sorry for the poor suggestions but I feel for her. It can be hard to pick yourself back up when life kicks you in the ass.
nycefm3 points6y ago
My friend you have to be there fore her. This is a time in her life when she is going through some ruff times. Best of luck to you man.
SwedishViking353 points6y ago
Thanks and I'm trying my best but I'm not superman. I have a full time job, big house, two kids, friends and my partner. I'm gladly helping her whenever I can - that's what you do for a partner. But you do sometimes need a smile, nice words or anything back to keep it all going.
yourewelcome_bot1 points6y ago
You're welcome.
ObscureRefence1 points6y ago
If it's really starting to impact her life, she's probably feeling scared and vulnerable. i know that I tell people I'm partially blind only when I have to ask for help, and it feels like I'm saying "Don't expect too much from me." I've always been afraid of letting people down, and now that I'm starting to get into disabled territory I sometimes feel like I'm basically useless. I felt for a long time like I shouldn't inflict myself on people because I was more trouble than I was worth.
What helped me was therapy that didn't focus on coping with my medical issues or what I have lost. I focused on self-esteem and learning that my friends and family like me enough that they won't dump me because I need extra help now. I don't like identifying myself as partially sighted/blind (although I make a hell of a lot of jokes about it when I run into things or miss a sign), it's just another data point about me that comes up when necessary. Therapy helped me like myself enough to start helping myself, and let other people help me.
Vaelian1 points6y ago
That sounds almost like me, but I was already born disabled with 20/200 sight due to a congenital glaucoma. I didn't care much about losing sight for as long as it was enough to read magnified high contrast text off a computer screen and code, but once I went blind I became obsessed with it. Perhaps the first step is figuring out exactly what it is that she used to like doing and can't anymore, and finding an alternative way of doing it. It didn't work for me since coding blind is a real pain, but it might work for her.
Regarding the train stop problem I personally use a GPS app called BlindSquare which, among other things, allows me to mark places of interest and sounds an alert when I'm approaching them so I can mark bus and train stops, but yes, I'm always afraid of falling asleep in the train or running out of battery on my phone and missing the train stop where I'm supposed to exit, leaving me in a situation where I have to either jaywalk across and risk getting run over or potentially get disoriented trying to find the overpass.
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