When you think of mothers, one of the things you may think of is that we are the rule makers…the enforcers. But I’m here to tell you to break a rule. All of this talk about how social media is not good for you…it’s negative… it’s not real… you shouldn’t be spending time on social media…IGNORE it. Social media saved me and made me feel sane during a time when my son was at his worst.
You see…my kid is one in a million. We all like to say that, right? But, he literally is. He is one of the one in a million people worldwide who has an autoinflammatory disease.
When he was having frequent fevers and couldn’t walk because of joint pain. When all of the organs in his body were inflamed and the pain in his abdomen was so severe that he cried nearly all day. When the fluid around his heart and liver was inflamed and his brain was so overloaded with inflammation that he had seizures. When even our doctors didn’t know what was going on in his little body…social media was my salvation.
It led me to the Autoinflammatory Alliance, where I found a community of moms who lived all over the world, terrified and looking for advice. This community… this social media community… made me feel normal in a way even my husband couldn’t understand.
They are the ones I could scream to (virtually, anyway) when our medication prices increased 285 percent last month. They are the ones who told me it was normal to drive 7 hours for an appointment with a pediatric rheumatologist (after all, there are only about 300 or so of them in the entire world). They are the ones I can roll eyes with and laugh when someone confuses auto inflammatory with autoimmune.
They get me…and I would never know them if it weren’t for social media. It’s wonderful to have a connection with someone a world away. Someone who you will likely never meet and would never know otherwise, but they play a great supporting role in your life.
I try to imagine what it would have been like to be in this situation before the existence of social media. I would have likely been one of a couple or a handful of moms in my state who had a child with an auto inflammatory disease, and I would likely have never even gotten to know them.
I hope that my son too, can find comfort in this community as he gets older. To know that there are others just like him who he can talk to, and he can have conversations with people who understand him in a way that others simply cannot. A community who will be there for him if a new symptom pops up.
Now, is there still bad stuff on social media? Of course! Don’t kid yourself into thinking the woman from your high school who is a beautiful Palm Beach housewife has a perfect and stress-free life. Don’t be jealous of someone’s seemingly blissful vacation that may have put them in debt up to their eyeballs. And don’t even get me started on the political stuff…
But in our community of American Mothers, how many of you did I not know just a few short weeks ago?
How have we gotten to know each other? Social media.
How will we stay in touch? Social media.
So, I’m here to tell you again: Get ON social media and find your tribe. There are moms out there JUST like you, and it’s good to know that you are not alone.
Heather Briganti has held many job titles, but the best one by far is Mom. Becoming a mother showed her the meaning of true, unconditional and selfless love. Raising a child who is funny, smart, clever and who just happens to have a rare disease is the joy of her life. As the mother to an only child, she has learned that proudly responding “one” rather than “just one” when asked how many children she has is just as great, exciting and wonderful as the response “two”, “three” or more! Read more about Heather here…