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 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!
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!
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 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!

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 ❤️