I think counselling with a focus on blindness and support groups are a good first step and when he’s ready, look at the vision rehab services in your area.

There are two issues here. Neither is easy but the u both have to be dealt with.

This man broke up with you. For whatever reason (s) he's stepped away from your relationship. Accept this. Respect his decision. You are talking, and people are answering you, like you two are together and the things you learn here will be received by the guy who just told you to go away. If you're learning these things to help yourself understand his situation, well and good, but he's closed the door that allows you to bring them to him. As much as you love him and want him to persevere, these have always been his decisions to make. The first thing a person with a disability will tell you is annoying as hell is having some non-disabled person tell you how to feel, how to behave and how to proceed with a new situation that the advising person doesn't have any personal experience with. Don't be that person especially since he's broken up with you. If you're fighting to be heard, you're that person.

If you're determined to remain open to him coming back to you, set a deadline in your heart and respect yourself enough to hold to it no matter what he does or doesn't do. Until that time, leave him alone and let him deal with this as he sees fit whether you (approve) agree with his choices or not.

The other thing is his new disability. RP is tricky and uncertain. There are no set rules about progression. What he chooses to do about further testing, rehab, O&M, genetic counseling, career and 'dreams' is all up to him. He has many options but they're all things he has to decide for himself. No, he won't be able to drive, and yes, hes not the first to have that privilege taken away. Counseling can help him with all this but, again, that's his choice. His life was never over. His dreams are not ended. They're changed. Every human being has had to adapt to some surprise thing in order to live their lives. Blindness is no different and honestly, one of the easier ones.

Beware the words you use or cognizant of the words he uses (if you ever reconcile.) Both need to reflect the open-endedness of this situation rather than the perception that things are dead, fixed or unlivable but you can only change yours. Since he's stepped away from your relationship, you don't have to be involved with his. This 'is' a good tool for relationships, tho, and a thing you can take with you into all future interactions.

On suicide:

A determined person isn't going to announce. They're going to act. Many who act, fail and leave themselves with further impairments. Those who succeed leave a trail of devastation that will last generations. Many who consider suicide realize they need help and get it. As witnesses, we can only do so much for those in crisis. We cannot force people to behave the way we want, for example. We can't bargain or negotiate with them. They have their process and we must respect it. You are not the n a position, legally or morally, to make decisions about his mental Healthcare. Those are for his family or himself. Respecting his wishes are the best gift you can give him, actually. Were he your child or spouse? Different answers apply. In this situation, your limits are laid out. He has to realize he has options. I pray he does. I chant for both of you to have happy, fulfilled lives.

For anyone else thinking suicide is the answer, do a little bit of thinking and write two lists. On the first list, write 5 things you'd miss if you weren't here tomorrow. These can be people places or things that depend on you, too, like pets, or a regular bus driver or neighbor you speak yo regularly. On the second, write 5 people, places, things that would miss you if you weren't here, tomorrow. You don't have to stop at 5. You can also think of the second list as people/places/things that help you it that you have come to expect or depend on. The bonus list is things you're grateful for. Ten of these.

I struggled with suicide my whole childhood and didn't have these gifts. When I discovered them, I integrated them into my life and my practice. There is no easy answer as to what to tell a person considering suicide but there are ways to help them see their value and interconnectedness.

I'm going straight to the point, because realizing this is what saved me: the odds of actually succeeding in committing suicide are against him; there's a far greater chance of ending up with even more disabilities than of actually dying. The priority at the moment is to save him from himself; the rest will likely solve itself over time as eventually he will adapt to shit being the new normal. Once he realizes that, convince him to attend vocational and rehabilitation training before his sight is completely gone, because it's much easier to go through that with some sight, and help him find a fulfilling hobby. Also avoid the temptation of ever sugar-coating anything, because that just makes the person feel that you are devaluing the problem. Instead show him that accepting it is the only viable path, so the sooner he comes to terms with it the better.

I went through the exact same thing. Yep I have RP, it is not fun. I'm 49 now and have a little vision left.
Hey I'm a pretty cool father, I'm covered in tattoos and live a somewhat normal life. If your partner wants to talk to me or email me please feel free to contact me and we can set something up.
I'm in Connecticut for what that's worth.
Let me know. Remember to shut up and just listen, lol. there were many times I just needed to vent on my bad days, it helps. Sounds like you are doing well. Remember I am more than willing to talk.
Let me know, to be honest for me it would have been huge to have someone that is going through RP
I am a cane user, jeez that was tough, felt like everybody was looking at me trust me those ideas go away. Hey if you want to talk we could as well. Not sure how his vision is now, become a good sighted guide! Remember the two of you are going to be a team! My wife is an incredible sighted guide. Gotta make the best of it. We laugh about it now, ya have to.. it's not a joke but if done enough crying gotta stay positive!
All the best to you both
Rob in Connecticut
-Stickman

My husband has RP. He still has very strong central vision. He is turning 50 this year. He only stopped driving about 7 years ago.

The long and short answer to your question about how long your BF has left with his vision is, nobody knows. There are kids diagnosed with RP who have no vision at all in a short time span. There are others like my SO who maintain central vision for a long time. We are only now coming to the point that he should start using an ID cane in crowded places.

RP is a disease that comes in all shapes and sizes. The other advice in here is great, and you should definitely listen to it.

I will say that when my husband and I started dating, he had had many years to get used to the idea of his impending blindness. He told me about his vision problems on our second date, and did it in such a way as to confess it like it was a deal breaker for me. It wasn't. It isn't. We've been married for 18 years. It's hard, I'm not going to lie. All the driving and errands are on me. He hates feeling like a teenager waiting for mom to pick him up. He has emotional issues tied to it, for sure. But we have a wonderful, fulfilling life together.

Your BF has been handed a tough deal. And it's going to take time for him to get to the point of acceptance. When what is normal for someone has such a huge shift, it takes an emotional toll. I completely empathize with you on how frustrating and helpless it feels watching someone you love go through this. It's hard. But he has to choose to deal with his reality. I hope he can speak with someone who has been through it directly, and see that there is life, GOOD, MEANINGFUL life, on the other side.

Sending you hugs!

He is pretty much throwing himself a pity party. Losing your vision sucks, but that is life. He really only has two choices, you can either except it and move forward or let it eat him alive. I was diagnosed at six years old and 40 years later I needed a seeing eye dog. So no one really can tell you how long he has left of his site. Until he starts to accepts his diagnosis there’s really nothing you can do other than be there for him if and when he decides to call you. I’ve been where he is and it just takes time, but unfortunately some people never except it and stay bitter. A relative of mine was a blind mechanic for many years, but eventually changed his profession and he’s doing very well for him self. That was about 15 or so years ago now and the technology increasing it may prove to be difficult nowadays.

There are training centers for the blind that can help with this and counseling would be a good idea too but it has to be his choice. The training center I went to even had a small engines course where they teach you to work on mechanical stuff blindfolded, I didn’t take that course because I’m not super interested in it but I did the wood shop course and ran heavy machinery blindfolded, his dreams may look different but they don’t have to be a total loss.

He’s grieving right now and that is to be expected, vision loss is hard to cope with emotionally and changes like this feel like a slap in the face countered by a gut punch.

hello! So sad to hear he isn't handling the change well. It's natural. My only experience with this, Retinitis Pigmentosa, is my 27 year old boyfriend whom was diagnosed since he was a small child and his vision has been deteriorating since about age 4. There is no way to know how much they will end up losing visually. He cannot drive or do most things but with a bright area and it being close up he does pretty well. You adapt. You change your life. You make it interesting and unique. With technology these days he can still find things to do like certain games he can still play and he loves podcasts. He functions very well with everyday life. Sometimes I hide from him in the house to mess with him. We shouldn't be sad about things we cannot prevent...just make the best of your situation and keep going. His grandfather had it and died in his 80s with still a little vision yet so there is hope he will still have some left and if not well then we are getting by just fine any way :) Act normal and be happy. Just some things he cannot do anymore and some things you have to adjust and get creative!

If he's not able to pass a sight test for driving he shouldn't be driving and that's not for his sake, that's for other people's sake.

I have known people with RP who are still able to drive in their 30s, but I have also known people who went from diagnosis to being blind in months and the medical people don't really seem to know so frankly you and he need to be prepared for either possibility. In the end it doesn't really matter; you'll deal with it as it happens, whether that's fast or slow.

My background is a bit different in that I went from normal sight to nothing in an afternoon, but I said very similar things. I didn't want to live with it, it didn't seem worth it. I was training to work in television so that all went away overnight. Turns out it was worth it and while I am totally realistic about not liking the disability (you can tell him that) it does not ruin my every day and it does not ruin my life.

It seems to me that you are dealing with two issues here. First is his fears about the future and second is dealing with whatever happens whenever it happens. All I would say is give him a couple of days and call him because I went through losing almost every friend I had and it was hideous. They think they're giving you space, whereas honestly the last thing you want is space, you want people to talk to and do things with, or at least I did.

I am not sure how much help I can be but am willing to try. I was recently Told I am now legally blind. They do not know why but it Hass to do some thing with my nervous system or an autoimmune or something like that. I turned 36 two days after I received the news from my doctor. I can say that my experience navigating through this has been quite a roller coaster. I am going through the grief stages, especially denial myself. Part of me thinks that may be my vision will improve despite the fact that they told me that it won’t. Recently I entered a depression and realized that my normal coping mechanisms i.e. getting out and doing some thing it’s not really feasible at this point because I can no longer drive. So now I am trying to accept and mourn the loss of my car and my freedom. I have a wonderful guy in my life and I too feel like maybe I should detach from him. I too wonder at times how I’m going to survive these trials for the rest of my life. I feel as though I am a burden to everyone around me. As someone who is incredibly independent this is been quite difficult thing to process. A big part of the problem is that being a young age and they expected to provide for myself forever. I don’t have the luxury of stopping. The need to provide for myself and continue moving forward is strong and important but I feel like I’m at the mercy of everyone around me. My future is uncertain. I can no longer do or work the way that I used to there are lots of resources but that literally requires relearning my entire way of life. I feel this pressure from society to pick myself up and brush myself off and get back to work. It’s like no one is truly acknowledging what this actually means. My experience with my family is similar and I feel my support group is extremely small. I am feeling like this get up and shake yourself off mentality is that it’s a lot to ask of somebody that’s a lost or is losing something as valuable as their vision. I applaud you for your devotion and caring and the role that you were taking in his care. Is evident that you care very much about him. If he makes the decision to end the relationship your hands may be tied. I would want my loved ones to not let me push them away but I am also moody and angry as I move through the process so who knows. I personally feel this process is some thing that I need to go through on my own. I can except help from others but I feel like this process is going to require me finding a way to live with myself first else I become completely dependent on others. I too would be concerned about his mental health. I think the best thing that I did was get in touch with local agencies they can provide me valuable resources. I also think counseling with a focus on chronic illness and or vision loss is going to be crucial. No one understands what this is like. I feel confident in saying that because I look at who I was before and I look at who I am now and I am amazed at how ignorant and entitled I was to have my vision. I suspect he will need time to process and move forward. If you choose to continue to be a part of his life assuming he will let you then I suggest to you that you may find a support group yourself for individuals who are supporting those with vision loss and or chronic illness. I’m not sure if this is helpful or not but felt like it might be. I wish you both the best of luck And send my prayers and thoughts of healing as you move through this journey.

Your boyfriend is in a very bad place right now as are a lot of people diagnosed with conditions like RP or suddenly lose their vision. But there are lots of people with visual impairments that live happy lives even those who are completely blind. No one wants to go bliind. Hell im still scared of it too and i was diagnosed over 10 years ago. But there is life after blindness and there is life after the diagnosis too. I was just a kid when i was diagnosed and i always felt out of place. I was depressed and had self loathing thoughts, and sometimes I still feel that way but i dont want to die. I am legally blind now and I wonder if I could be happy if/when I lost all my vision and I dont know the answer but I hope yes.

It is normal to get depressed after a bad diagnosis but I really think he needs therapy. His thought patterns are very troubling. I do not see him accepting his diagnosis anytime soon, but he needs to learn to cope with it right now. He is isolating himself right now which is dangerous. You should really keep an eye on him as best you can or try to talk to his family and help them understand what he is going through.

In terms of how much time he has he can only find out if he sees a retina specialist. They will do tests and take images of his retina to see how many rod and cone cells he has left and how quickly his disease is progressing. After that they will likely reecommend him to see a low vision specialistt who will be able to perscribe him glasses, magnifiers, and/or other visual aids to help him do certain tasks. They could also get him special training for visually impaired people so that he can actually do his job but it really depends on how much visioin he has left. he could probably still follow his dreams and do the job until he cant.

Side note he cant be discriminated agaiinst for being visually impaired that is illegal. I think as long as the company has at least 25 employees they cannot deny you for that reason alone unless they cannot accomdate you to do the job. As long as you can do the job being visually impaired cannot be the reason they dont hire or the reason they fire someone. And lastly if his vision is raelly so bad that they would revoke his license he should stop driving. I know he doesntt want to, I desperately wish I could drive instead of relyin on my family to drive me around, but for his safety and the safety of ohters he should really stop if his eyesight is hindering him.

I was diagnosed at 16 with RP. I now own a home, work full time, have 3 kids, and have working vision. Losing your independence and having to rely on others sucks. I spent about a year or 2 depressed after my diagnosis. It’s a process and even now, I sometimes struggle. It sounds like he needs to come to terms with it and that will take time.

RP is unpredictable. Every eye doctor I’ve seen, despite regular visits, tell me the same thing. There is no real answer on when you go fully blind as each case is different. There have been clinical trials going on that are promising for some variants.

Someone once said that grief counseling should be required when receiving a diagnosis and it is so true. The unknowns can eat you up inside and the idea of losing opportunities before pursuing them can be devastating. It’s a lot to process.

I can see you care and that you’ve tried to help. Let him know you’re there for him when he’s ready. It’s all you can do really.

I went through sad, angry, numb, and denial stages over it. Feel free to PM me or let him know he can PM me to talk.

I've sent you a message! :) It was too long for a comment, I thought, hahaha

My heart goes to him and you. This may be a really hard thing to process. I dont think that he broke up with you because he does not love you anymore, he is just overwhelmed about this entire situation, he definitely needs your support but do not out too much pressure on him. He is definitely passing a grief which is never easy, please i encourage you to call a blind counselling and tell them about your case, they might be able to give him some support and help

Tell him he’ll be cured before he loses his vision.

Stay with the clinics, go to the doctor, get those checkups, ask to be added to lists for clinical trials.

His specific mutation sounds like he could be straight cured with 4D-125 or 135 gene therapy - only a couple years away.

Neurotrophic therapies Ocugen OCU400 or jcell by jcyte…only 2-5 years away from the clinic….these therapies effectively cure RP.

He shouldn’t worry. Make sure he exercises and eats healthy..that can slow the progression until the therapies reach the clinic.

He has to admit to himself that he's in a different situation now, living a life he didn't expect. Honestly, the driving thing isn't safe. He could kill himself or someone else. I would turn him in for that, if I were you. What he's experiencing, the anger, disappointment, and loss, are completely normal. Whether from birth defect or as a result of vision loss at a later age, being blind requires us to live differently, to find ways to do things that aren't the ways used by most people around us. He may need life to smack him in the face a few more times before he's ready to seek support and resources. I did. Thankfully, there is plenty of help and support out there for when he's ready. One strategy you might try, is to listen to him talk about what he wants to do, and if he tries things and fails, suggest ways to succeed without sight. My doctor did this with me when I was failing out of college because I was too stubborn to admit I needed help. He was like, "Let's make a list of the things you want to be able to do, then figure out what you need to do them." I ended up doing really well in school after that conversation, and got a great job when I graduated. I wish you both luck and hope your boyfriend admits his situation and starts living again.

Aw man :( I'm sorry that he's going through this. I have RP so I can sympathize at least a bit.


This

"He told me he does not want to live if he becomes blind."

concerns me the most.

Is there anyway _you_ could call a crisis line or a counselor to get advice on what to do regarding this bit at least?

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