Blindness Awareness Month Fact of the Day (October 18): Doctors can be silly

When I was first diagnosed, the doctors assured us that this was a slow progression.. most of the literature stated that individuals with RP don’t become legally blind until they’re 40.. I was assured by the doctors that I would have most of my sight for most of my life. Here I am, at 24 years of age, way past legal blindness. That irritates me a bit. And then, I can’t help but think of one of my best friends and her brother who were diagnosed at around age 5 and 7 and were legally blind in their teens. There are WAY more cases that I hear of nowadays of situations like this, early loss of vision, than what we were told back when I was diagnosed about being able to hold off til you’re losing your vision til later in life.

So what does that tell me, or what should that tell you? I’ll let you make your own decision on the latter but for the former, that tells me that doctors can be very wrong and that no one person’s disability or medical condition is the same. Now, I do realize there has been a lot of research done since then and the literature might have changed. I haven’t bothered to look that extensively recently. But I don’t think it really has changed that much.

How has this impacted me? Well, my family and good friends were banking on me not losing my vision until really later in life so when I did start to lose my vision fast I was confronted with people telling me that my vision didn’t progress that fast (quoting what the doctors and literature said), shock, horror, and and a lot of adjustment. I’m not faulting anybody on any of that, except for maybe the doctors and the literature who made it sound like it was set in stone that I wouldn’t lose my vision until I was around 40. They really should have explained how it’s really different from person to person.

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Jessica N and Makiko

Jessica is a proud Texan. She graduated in 2014 with her Master of Science in Rehabilitation Counseling and is now employed. She is visually impaired and has a retinal disease, Retinitis Pigmentosa. Originally Jessica started blogging about everything from being diagnosed with the disease to where she is now, almost 9 years later. Then, Jessica went to Guide Dogs for the Blind and was blessed with Makiko, her new guide dog. Now, her blog "The Way Eye See The World" is about everything related to visual impairments, including guide dogs.

One thought on “Blindness Awareness Month Fact of the Day (October 18): Doctors can be silly”

  1. I feel like in general, what a doctor says time-wise should never be considered something “set in stone.” It’s more like “it’s likely to happen this way from the information we have, but it’s not guaranteed.” But doctors can’t say it like that because then they sound like they don’t know what they’re talking about. Well, I guess that would be better than a flat out “I don’t know what will happen.” Or maybe they don’t say that because they were trying to be reassuring and “probability states that it will progress slowly” is less reassuring…

    In any case, I’ve heard a lot of stories about doctors saying cancer victims have maybe a few weeks or months, but then they live for many years. Plus, I feel like our nutrition intake is different from a few years ago and varies from person-to-person, so that can have a huge effect.

    Finally, I’m not trying to say not to be mad at doctors (you can be if you want), but that is just how a feel about the subject. I feel like a lot of that could be considered excuses for doctors, but that is just my reasoning. Doctors cannot tell the future, so don’t completely trust their timelines.

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