My bf has X-linked juvenile retinoschisis and is slowly going blind

My (34F) bf (36M) is slowly going blind after two retinal detachment surgeries and continual progressive visual deterioration. Things only got substantially worse after we started dating and he’s had to take an indefinite break from work as a high performing corporate lawyer which has really taken a toll on his self-esteem and daily routine (having to mourn the loss of driving which he loved, close contact martial arts and other “high risk” sports, scuba diving, dancing, reading books etc.).

What have you guys done to ensure that you keep up some sort of routine while still remaining productive?

We’ve talked about possibly going back to school to retrain as a psychotherapist with the help of visual / technological aids, and the possibility of getting a guide dog in the future. These endeavours are not cheap where we’re from (Southeast Asia) and even just delving into the pre-preparatory steps can be met with some pushback on his part, even though he’s been frugal over the years and has a healthy retirement fund precisely because he foresaw this situation. He sees a therapist regularly twice a month, and I see mine weekly; it’s been suggested that perhaps couples therapy should be explored to navigate this situation. Thoughts on that? I would rather not waste precious additional resources on additional sessions if there are more practical ways I can take to make his life better.

How can I best support his journey? We have spoken about settling down and possibly starting a family (IVF + embryo gender selection to stop the genetic disease being passed on).

If anyone has or is going through something similar — feel free to reach out in reply or via DM, I’m using a throwaway for now for privacy but happy to connect with my main if that’s required for posting here.

Posted May 11, 2025, 4:42 PM UTC

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