Your tribe, your gang, your buddies, your crowd. However you choose to refer to your social group, they are the people you gravitate to and become friends with based on shared interests, experiences, or other commonalities like school or work. Occasionally your tribe is shaken up or altered a bit by normal life transitions, such as changing schools, careers, or relocating. If you are a parent, your kids' interests can have a similar impact, throwing you in with other parents whose kids have shared interests.
However, what happens when life throws you an unforeseeable curve ball that suddenly takes away your established social groups? That is often what happens when chronic illness strikes, and when a child is stricken it can strip away the social groups of both parent and child. This doesn't happen instantly, it's more like they melt away over time while you are caught up in the drawn out challenges of medical survival. Eventually, when you finally get a moment to catch your breath, you and your child come to the realization that everyone else has moved on with their lives. You become painfully aware of the reality that there is no longer anyone who drops by to visit or reaches out to offer any support, you are no longer on anyone’s guest list, and you quite frankly no longer relate to many of the people you once did anyway.
This isn't always intentional. People live busy lives, and as time passes you just fade off of their radar. For those you still run into on occasion or are still connected to on Facebook, they often don't know what to say. They hesitate to inquire because they don’t want to pry or risk hearing bad news, or they just aren’t interested in hearing any medical details. It's easier for them to simply avoid you than endure an awkward conversation.
By the way, it's okay to disconnect from those people that you are still connected to from your past on social media. In fact, in many instances I encourage it. Who wants to stew in the negative emotions that result in watching those healthy people from your past getting to live the life you and your child no longer get to enjoy? That can seriously eat away at your mental health. In fact, disconnecting from a number of people on social media was one of the best things I did.
The reality is, you and your child no longer belong to the tribes you once did. You are left feeling discarded and isolated, tribeless and alone. This is what my daughter and I experienced. Before my daughter’s rapid health decline, she had been a competitive soccer player and I had established a corporate career. The onset of her chronic illness stripped that all away for both of us, and caused my physical health to decline as well.
My daughter and I felt left in limbo for quite some time, years actually. Eventually we came to grips with the fact that this is our new reality. My frustration and hurt turned into resolve, especially as this isolation was leading to increasing depression for my daughter. It was high time to take control of this frustrating situation we had been dealt and put a positive spin on it. The reality is we still have a tribe, a new, different tribe. I know this because I have come in contact with so many others like us online on Instagram or in medical forums on Facebook. The vast majority feel forgotten and isolated just like we do.
My resolve isn't just to lift my daughter and I up, but to extend a hand to so many suffering the same fate. The reality is there are many just like us in every community. We just have yet to meet our new tribe members in our own area. At this point, my effort has just begun, but I am already making significant headway. I have arranged to provide a local monthly get-together for teens with invisible chronic illnesses and their caregivers. Interest in participating is steadily growing. We aren't alone! We DO have an amazing new tribe of resilient, creative, funny, caring chronic illness warriors out there in need of finding their new tribe too. We just needed to create the opportunity to connect with them in person. I can’t wait to meet our new tribe!