So, you’re legally blind. Were you born blind or did you lose sight at a later age? Is it a big deal in your life, or Is it easy to ignore? Has sight loss made you a stronger person? Have you broken down barriers so you can experience life on your terms? Have you been open about your sight loss story? Even if other people don’t have your specific type of sight loss, chances are they might relate in other ways. I have lived with Lebers Hereditary Optic Neuropathy (LHON) for 4 1/2 years, and through my blogging, podcasting, and speaking, I talk about my sight loss all the time. This may come as a shock to some of you, but I love to talk. I know. Hard to believe, but I also love to listen to other people’s stories. So why not share yours? Here are 5 benefits of telling your story, and how they might Impact your life.
How much did you know about your type of sight loss before you were diagnosed with it? I knew nothing about LHON or Mitochondrial disease before my Neuro-ophthalmologist dropped the bomb and said there are no current treatments or cures. Permanent sight loss from LHON would be something I had to live with for the rest of my life. If I didn’t know anything about LHON, It was likely that my family and friends knew nothing as well. Now, my friends and family are well aware of my condition. For the most part, they understand what works and what doesn’t work for me. The more we share our stories – the more educated people will be about sight loss.
When you’re open about your sight loss, you’ll discover somebody in your circle knows somebody who is living with the same or similar condition. Suddenly, a connection is made and you no longer are facing sight loss by yourself. You are part of a community, and there is strength in numbers. And the more you share your story in person, on the phone or online, the more likely it is that you will find other people who do understand exactly what you’re going through.
When you’re first diagnosed, you may feel like you’re all alone. Nobody else “gets it”, so why bother trying to talk about it? It can be difficult to talk about sight loss. But getting the words out creates room in your pretty little head to sort through the realities of your life living with sight loss. By writing about your day or an experience, you will spend less time dwelling, and more time doing!
I suspect many of the people you hang out with know you are living with sight loss, but can be a difficult topic for them to bring up in conversation. They likely want to know more about the vision loss and how you’re coping with it, but they’re afraid to ask. So,, ease the anxiety and be the first to talk about it. This allows you to control the conversation and answer any questions. Keep the discussions short, sweet, and informative. Talking on and on about your sight loss may give it more attention than it deserves. Talk about the elephant, then quickly shove it out the door.
I found that one of the best things about blogging is connecting with my followers and fellow bloggers in the blind community. I am a total open book about my unexpected life, and I think people feel comfortable about sharing their tales of sight loss with me. In sharing my stories, I have the amazing opportunity to hear other people’s stories, listen to what they have gone through, and learn from what they have to say. We must remember that we aren’t alone in our stories of struggles, successes, and sight loss.
I cannot imagine another person, with sight loss has done more than you have…..you have open communication and information to others who have the same issues….again,maria hayes johnson, you are a rock star