Hundreds of years ago, Marcus Tullius Cicero said, “Friendship improves happiness and abates misery, by the doubling of our joy and the dividing of our grief.” – These words remain relevant today. Nowhere else might this be more true than in the various social media groups, social apps, and online communities for people living with chronic illnesses or disabilities. These are people who are united by a common interest, such as vision loss. They are the tribes. And here are 5 reasons why you might want to find yours!
1) You can surround yourself with people in similar shoes. I started by finding trusted and caring friendships with people also living with LHON or other forms of vision loss on social media. These are bonds created through the crossing of our paths online, and we’ve become close friends. These are people I would not have met if it hadn’t been for losing my vision. They can make you laugh or listen as you cry. They may live in another state, or country. They may be older or younger than me. And often our vision loss is the only thing we have in common, but sometimes that’s enough to make a connection.
It can be a bit of a process in finding your fit amongst the gaggle of online groups. Don’t get discouraged. Some groups have a stronger focus on discussing the latest research, treatments, and clinical trials for specific conditions, while other groups concentrate on assistive technology for anyone with vision loss. Then, there are the groups where people want an empathetic ear to share their thoughts, troubles, and triumphs, or maybe just need a piece of advice for a loved one going through vision loss. And there’s plenty more to explore. It doesn’t take much time hanging out In one, (or more), of the various groups or communities to get a feel and flavor of the people in it. If the group fits your needs and interests, then stay. If it doesn’t, then leave and be on your way.
“A friend is someone who gives you total freedom to be yourself,” ~ Jim Morrison“
2) Family isn’t always the best support system. Unfortunately, family members don’t always “GET IT”! I am grateful to have family and friends who want to understand life with vision loss, and also educate themselves about LHON. But, they still don’t get it like my friends with vision loss do. As I already said, finding others who walk in similar shoes is comforting, validating, and a blessing. Our shared experiences form the foundation for building a trusting and supportive tribe.
3) Having a variety of tribes In your life is socially healthy. A tribe Isn’t solely made up of friends found through online groups. I have several other tribes in my life. My “Girlfriend tribe”, my “Fitness/Gym tribe”, and my “Mom tribe”, are just a few others I have besides my Invaluable “Blind tribe”. There is some crossover between the tribes and they all serve the same purpose in different ways. They all mean the world to me!
“There are no strangers here, only friends you haven’t met yet.” ~ William Butler Yeats
4) Getting to meet one of your online friends In person is simply amazing! If the opportunity arises, I totally encourage this! Meeting online friends in person for the first time Is pretty damn exciting! Since my LHON diagnosis 4 years ago, I have met many of my online friends in person. It’s never a creepy or weird thing. (Well, not as of yet!) It’s actually an unforgettable experience! I describe it as meeting a long lost relative that I never knew I had. And who was once a stranger, is now someone near and dear to me. My family has also met some of them at annual conferences or when they travel to my city and we make time to meet up. I hope that meeting my online friends in person helps my family understand what draws me into these cherished friendships. In other words, what draws me into my tribe. (Please be responsible and smart when meeting people, If you’re not comfortable with it, don’t do it.)
“Walking with a friend in the dark is better than walking alone in the light.” ~Helen Keller
5) It’s good to have your tribe, just In case you need them. I understand not everyone wants a bunch of friends – Howdy introverts! It’s a personal decision which will depend a lot on one’s needs and personality. As you may have already figured out… I, Miss Extrovert, need me some tribes! I think it’s better to have your tribe, and not need them. Than to need them, and not have them!
If you’re feeling alone, and wondering how you will ever survive… Keep in mind, it might be time, to go out and FIND YOUR TRIBE! ♥️