Things I Didn’t Want To Hear In The Early Stages Of My Vision Loss


You find out that a friend or family member was just diagnosed with a condition that causes permanent vision loss. They have been told there is no current treatment or cure. They may be in crisis, totally devastated, or in shock and denial by this news. Your heart clenches. You can’t imagine what dealing with that kind of diagnosis is like, but you know it is the type that makes it hard to get up every morning. You’re not sure what to say to them, and you don’t want to say the wrong thing. Are there things you might want to avoid saying? Well, based on my experience and talking with others, YES, YES THERE ARE! Here are a few select things I didn’t want to hear in the early stages of my vision loss. 

Avoid Using Those Easy “Go To” Phrases

Seriously. Try, try with all your might, not to say any of the following things to someone who is struggling to come to terms with the fact that they’re going blind. ~ “Well, It could be worse!”, “At least it’s not cancer..”, “You just need to accept it.”, “God doesn’t give you more than you can handle.”, “At least you had many years with vision.”, “You’ll do all the things you did before, you’ll just do them differently.” “Be thankful for the things you still have.”, and the famous “Everything happens for a reason.”. Hmmm. A reason? A reason you say?!? Feel free to tell me the damn reason!!! Good Gaawd people… These don’t really help. For me, they made conversations more upsetting and uncomfortable than they needed to be. If I had a dollar for every time I heard these remarks, I could afford my own personal chauffeur, chef, and a sassy cabana boy too!! 

Helpful Hint: Try to be empathetic, and sensitive with your choice of words. Granted, some folks may be okay with the above statements, but If you don’t know, don’t assume they are. When a friend or family member is faced with a new diagnosis, serious illness, or “turn my world upside down” situation… a hug, a smile, and a simple “I’m here for you.” can go a long way. A slap on the back and blurting out, “Well, it could be worse!” could get you some colorful language in return!  *Editor’s note: Wine and a big ass slice of cheesecake can be very comforting too.

Avoid Giving Any Unsolicited Advice 

When I was faced with my new diagnosis of LHON, I was overwhelmed by the information from doctors, resources, and our own research. When other people feel the need to give their two cents and share unsolicited opinions, stories, medical views, and snake oil concoction to cure us. It’s too much to take in. Mentally processing my LHON diagnosis was exhausting, especially when trying to explain to others why I don’t have a guide dog, or why I don’t want to chug down some random herbal concoction they saw on the Internet. Chances are, you’re not an expert on my disease, or living with vision loss…. so don’t try to be. Yes, I know people mean well, I really do. But, if no one asked you for your thoughts on the matter… please don’t give it. 

Helpful Hint: There’s a time and a place for those well-meaning conversations, and you need to wait for the right time and place. Sure, I WANTED to be able to field all the “Have you tried this?” suggestions… But, I NEEDED a little space, sincere support, and some time to process my own thoughts, NOT yours. *Ehh-hem….Wine and cheesecake might work well here too.

Creating a more Considerate Conversation 

I understand it’s hard to know what to say to someone who is going blind. Honestly, I wouldn’t know what to say either! And I’m rarely at a loss for words!! So, why don’t you put yourself in our shoes, (and give up your car keys forever), and think about how you might feel in our new, and permanent, blind circumstances. Consider our feelings. Imagine our struggle. Doing so will hopefully spark the right words for creating a considerate, supportive, and empathetic conversation with someone who is going through a “this IS the worst!” kind of situation. xx

Well, Someone Had To Say It! #sorrynotsorry

5 Comments on “Things I Didn’t Want To Hear In The Early Stages Of My Vision Loss

  1. god…I hope I didn’t say any of those inane things……….it is very hard to say something appropriate……

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  2. “Why dont you get a new pair of glasses::…….over and over and over again!! Hot damn you are a genius!! REALLY? I didn’t think of that!

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  3. Thanks for putting this into words. I am so sick of people telling me about treatments. Even suggesting I don’t necessarily know how operations and laser surgery has advanced. Not everyone can be cured is helpful for people to understand.

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  4. “Have you tried laser eye surgery?” – So tired of that one. You can tell people that your blindness can’t be treated that way till you are blue in the face, and they STILL send you links to surgery websites. Never mind what the many expert opthamologists have said! Never mind the fact that I’ve already done all the research I possibly could!

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  5. Oh my. I’ve told myself all those things. “Stop snivelling you’ve had many years of vision” is a hot favourite. Glad to know I’m not alone. Grappling with glaucoma.

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