Thank you Alison. I found your post after it was recommended by Mark Dykeman who writes
How About This on substack. I have a child with Low Vision and I appreciate your sharing your experience. There is much I have learned about his invisible disability and still a great deal more, I must learn. Again, thank you!
This is so beautifully expressed, Alison. This line of yours has really resonated with me:
'My disease is invisible, the things I do to “manage so well” are invisible.'
Diseases that are invisible to others are a constant presence and a daily grind for those who live with them on a day-to-day basis. They're a full-time job, exhausting and relentless.
I am often surprised that I 'get away' with the fact that I don't look as if I'm juggling my own condition on a knife edge every minute of every day, even though I am. 'I wouldn't know you had it', I'm told.
Thank you for the kind words! I actually visited my ophthalmologist last week and got stuck on prescription drops again, so it’s funny that you read and commented, after I negotiated him down from full rest of my eyes - because then I wouldn’t be able to do anything.
Gosh, Alison - full rest of your eyes - I'm glad you avoided that outcome this time. Hope you're doing okay and the prescription drops are doing their stuff!
Thank you for writing this. Your post left me analyzing my own insensitive comments and those others have directed towards me. What I was left with was thinking that when you have a disability, you are forced to live your life with a large amount of grace for others' behavior which is why I particularly loved your line "This time, I'm not asking." Thanks again.
I have keratoconus with progressive myopia. Was in third grade when I finally was prescribed eyeglasses and remarked at how I could now see the leaves on the oak tree in our front yard.
Fortunately, my disease is relatively mild compared to what you’re dealing with. I’m 71 and had cataract surgery last year where my lens was replaced with an Alcon toric. That helps significantly with the astigmatism.
I applaud and appreciate your forthright approach in telling your story!
I genuinely look forward to being 71 and being like, yes, it happened but whatever, even more! I’m not looking forward to some of the likely age-related complications but I know they’ll probably be caught early anyway.
Thank you so much for speaking out on visual disability. I have bilateral choroidal osteoma which blinded me in one eye and just waiting for total vision loss in the other. Your journey really spoke volumes to me and touched my heart as I struggle in the same capacity. I appreciate you reaching out to others and wish you well ❤️
I appreciate your honesty and love your posts Alison. Thanks for sharing.
Thank you Alison. I found your post after it was recommended by Mark Dykeman who writes
How About This on substack. I have a child with Low Vision and I appreciate your sharing your experience. There is much I have learned about his invisible disability and still a great deal more, I must learn. Again, thank you!
Thank you for reading!
This is so beautifully expressed, Alison. This line of yours has really resonated with me:
'My disease is invisible, the things I do to “manage so well” are invisible.'
Diseases that are invisible to others are a constant presence and a daily grind for those who live with them on a day-to-day basis. They're a full-time job, exhausting and relentless.
I am often surprised that I 'get away' with the fact that I don't look as if I'm juggling my own condition on a knife edge every minute of every day, even though I am. 'I wouldn't know you had it', I'm told.
I guess I'm managing well, then! :D
Thank you for the kind words! I actually visited my ophthalmologist last week and got stuck on prescription drops again, so it’s funny that you read and commented, after I negotiated him down from full rest of my eyes - because then I wouldn’t be able to do anything.
Gosh, Alison - full rest of your eyes - I'm glad you avoided that outcome this time. Hope you're doing okay and the prescription drops are doing their stuff!
All cleared up and doing well 🙂
Thank you for writing this. Your post left me analyzing my own insensitive comments and those others have directed towards me. What I was left with was thinking that when you have a disability, you are forced to live your life with a large amount of grace for others' behavior which is why I particularly loved your line "This time, I'm not asking." Thanks again.
Thank you. It’s hard too, to realize have you’ve been insensitive in the same ways to others - growth is eternal.
I have keratoconus with progressive myopia. Was in third grade when I finally was prescribed eyeglasses and remarked at how I could now see the leaves on the oak tree in our front yard.
Fortunately, my disease is relatively mild compared to what you’re dealing with. I’m 71 and had cataract surgery last year where my lens was replaced with an Alcon toric. That helps significantly with the astigmatism.
I applaud and appreciate your forthright approach in telling your story!

I genuinely look forward to being 71 and being like, yes, it happened but whatever, even more! I’m not looking forward to some of the likely age-related complications but I know they’ll probably be caught early anyway.
Thank you so much for speaking out on visual disability. I have bilateral choroidal osteoma which blinded me in one eye and just waiting for total vision loss in the other. Your journey really spoke volumes to me and touched my heart as I struggle in the same capacity. I appreciate you reaching out to others and wish you well ❤️
Thank you so much for reading. I’m so glad you found something in my story 💕