(Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet. These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)
The internet. The cause of, and solution to, all of life’s problems. Okay, I stole that line from Homer Simpson, only he was talking about alcohol. But it’s kind of a valid statement.
Like most people, I’m on Facebook. But having a chronic pain condition and perusing your FB newsfeed can be a pretty depressing activity. Everyone is posting about trips and fun events and how far they’ve run today while I’m just happy when I make it to my mailbox. I now do a lot of scrolling to find cute cat videos and I’m not even much of a cat person. Okay, the cat in a shark costume riding the Rumba is a classic, but a lot of them are just cats being cats. But it’s better than focusing on all the fun I’m not having.
Then I stumbled upon the Facebook groups for people like me. People with TN. The TN Family and TN Support Group in particular. They have been a Godsend because once I was diagnosed, I “came out”to my family about my condition after living with it in silence for many years and my family has been great. My friends, however are something of a mixed bag – some have really stepped up in ways I never expected, while others sort of drifted away. (And honestly, I’m not so great at keeping in touch either.) But nobody – no matter how sympathetic – really understands all the challenges TN creates. It’s not just the chronic pain. It’s the lifestyle changes, the roulette wheel of drugs, the fatigue, the boredom.
Finding people “like me” has been crucial to how I live with this condition. We “get it” and relate to each other’s pain like no one else can. We understand the frustration of well-meaning people who give us suggestions that run the gamut from unrealistic to downright patronizing. We share our concerns, frustrations and sob stories and always jump to each other’s aid with kind words and wisdom because we have been there. And if you haven’t been there, ain’t no way to pretend you have.
So today I say thank you to my TN Family. It may not be a family that anyone wants to join, but I can honestly say I wouldn’t know what to do without you.