Creating a New "Tribe" Due to Bladder Cancer

Everyone in life has their own "tribe." You know, your group of people - friends and family - who love and support you through thick and thin. Those who actually "get" you, who show up not just when it's convenient, but when it is desperately needed. When I received my bladder cancer diagnosis, I found that this sometimes needs to change, shift, adapt, adjust, begin, and, yes, even end.

In a perfect world, your tribe would just be there and adapt to whatever is happening in your life. They would grow with you and allow you to grow at your own pace as you would do for them. In reality, this is not always the case.

How friends and family acted after my diagnosis

My experience was that often people wanted to be there for you, but were also triggered by what was happening to me and would agree to do things, but then the follow-through was lost and they fell off of the communication grid. Some disappeared altogether. Some people who were considered acquaintances actually stepped up to the plate and showed up in big and unexpected ways. Others still didn't know how to act, what to say, or do and they fumbled about the situation and the topic from start to finish.

People who don't understand

There's a whole different class of folks who just don't get any of it! They don't understand the chronic, permanent effects that we face. They don't understand how you're in remission and still battling depression and struggling with energy and physical issues. Worse yet, they don't want to talk about any of it!

Discovering the new tribe

In light of my diagnosis, I made new and lost friends as well as strengthened old ties. While I was perfectly aware of this, it took a conversation with my friend, Danielle, at a conference for ostomates in August 2019 that it truly dawned on me. They were part of my new tribe! They got me. Regardless of their own diagnoses or experiences, they related to me and what I've survived. They were excited to discuss the successes and comfortable with discussing the not-so-fun parts of being a warrior-survivor-thriver.

Support from in person and online

I realized later, revisiting the conversation in my mind, that whatever tribe(s) you have, they all have their roles. Kind of like an old Girl Scout song emblazoned in my brain from decades ago, "make new friends, but keep the old," my supporters that I already had were, and are, an immeasurable source of love and support. However, my newer tribe members - those from my online communities, ostomy, and bladder cancer groups, are the ones that I seek out when I'm struggling with issues related to my diagnosis. They do the same with me. We have a better understanding of what we're experiencing than most people who have been in our lives from before.

Reaching out to get what's needed

It's just something to consider while navigating through your bladder cancer diagnosis. If you are finding a lack of support in your life, seek it out in other places - in person (if you're safely able to do so) or online. Support groups, the chemo suite...wherever you may be, you never know when you'll find that kindred spirit. If you're still not finding it, we're always here in the BladderCancer.net community. Reach out to us!

We'd love to hear your stories of finding your tribes. Please share with us here!