Did you just receive your diagnosis? If so, this post is for you!
I plan to make this into a bit of a series so the posts aren’t super long.
First off, welcome and I’m sorry. I’ll be very honest, it is not the hand I would deal to anybody. But that does not mean it’s all bleak from here, as I have found that living with a rare eye condition such as ours does bestow some gifts along the way. So don’t be discouraged by any of the negatives I include in this post or any others; I’m a firm believer that you cannot have the good without the bad or the bad without the good. I just strive to be open and honest about all things Stargardt here, which unfortunately does include the negatives. I’m hoping to give more insight than dread, as my words are intended to remind you that you are not alone, no matter how alone you feel. Especially after the initial diagnosis. I do not sugar coat but rather provide preparation, advice and coping methods for the “not so great:” parts of your impairment journey.
It is not the end of the world, I promise. I’ve survived half of my life with this pesky disease and, as cheesy as it is, I’m here to tell you that you will too. And you can do it as independently as you would like. I’m a stubborn bull of a human that likes to do everything I can on my own without help, even if help would make things easier on me. I believe that is part of the deal with a disease that strives to make you dependent on others. You can do way more than you think all on your own.
I plan to leave my personal story to my posts in the personal blog posts category as much as I can, so I will summarize my diagnosis story here. I was 12 years old and on my 8th doctor – mind you, this was 12 years ago when the disease was thought to be even more rare – when I finally heard, “I believe you have a form of macular degeneration. You will be okay; the worst part of it is that you will never be able to drive”.
THIS IS NOT ALWAYS THE CASE! Some people with vision impairments can and do drive with biopic lenses.
And with that we were sent on our merry way. The good doctor set up an appointment with yet another specialist to verify the diagnosis, but we were pretty much told that I had Stargardt Disease. Side note: I switch back and forth between calling it Stargardt and Stargardt’s. I actually prefer it with the “‘s”.
I am in no way saying this doctor’s nonchalant demeanor is the norm, nor am I saying it is right or wrong. He might have been delivering the news in a relaxed way to bring us some comfort; if he didn’t see it as a huge deal then we shouldn’t either, maybe? However, my parents and I had never considered that whatever was going on would be uncorrectable/incurable. That was undoubtedly the hardest part to comprehend. So, cut yourself some slack! It is not an easy thing to accept.
I do hope your diagnosis experience went more smoothly than mine, but if it didn’t, join the club! We’re still okay. I was a bit too young to fully understand all of it so if you, my sweet reader, are 10-13 I am truly so sorry that you are going through this at an age where life is still supposed to be carefree and child-like. You might roll your eyes at that because it’s so annoying when adults tell you to enjoy being young while you can, I know. You will gain a sense of maturity beyond your years, though, I promise you that. Having to grow up earlier than the “norm” is not something I wish on any child, but it will shape you into a strong, compassionate person that is wise beyond their years. And with that I also mean you will be wiser and more mature than a lot of others your age. Don’t tell them though, it’s a Stargardt secret.
This is being written near the open COVID vaccine part of the pandemic so hopefully you are in school again. I say this because one of my greatest supporters of all time was my 5th grade teacher. Shoutout to Mrs. Bowsman, I am forever grateful.
You might not like your teacher and you might come across some teachers that just do not understand your situation very well, but there are countless teachers that will go above and beyond for you if you let them. For me, this diagnosis brought me out of my shell. I found that the more open I was about my disease when talking to my teachers, the better our relationships developed and the more comfortable I became. I strongly encourage you to find maybe just one teacher at first that you feel comfortable talking to about your vision. If you are shy, I know it’s incredibly difficult but I promise on everything that it will get so much better the more you talk about it. Especially to adults that can help you figure out what works best for you.
I know as an 11 year old it isn’t so easy to explain a condition that you might feel you don’t even fully understand yet, so please send me a message here or ask a patent/guardian to message me and I will help you figure out how to explain to your teachers or your friends and family exactly what is going on. I’m more than happy to help; I’ve done this over 100 times now.