When I started sharing my story online, I never anticipated just how many people would start following along. In just a few short months I had subscribers, a partnership with a patient advocacy organization, and joined a cancer patient advisory board. Quickly my public diary became a second job.
Establishing a clear line
I am no instagram influencer. The majority of my social media scrolling revolves around funny dog videos. Yet as I cultivated an audience and various engagements, my social media cancer life began to butt heads with my very low-key everyday life.
Adding in support group meetings and my never-ending doctor appointments, my cancer persona was taking up more and more space. It came to a point where I needed to set some strict boundaries. Whether you decide to share your cancer journey on social media or just keep it amongst family, there has to be a clear line of where cancer stops and you as a human begins.
Setting boundaries with bladder cancer
Because I do have a public life, my boundaries may be a little different, but we can all benefit from having clear expectations with our friends and family when it comes to cancer.
As far as being a content creator, sharing cancer life, I have to schedule a time where I "work" and when I'm off. I have specific days when I write articles, edit photos, work on my website, and create social media content. When I'm off the clock, I really make a point to check out from everything. This is also why I have private social media and my public-facing pages. I don't let the outside cancer world into my personal life.
This is an important boundary to set even if you are not involved in social media. Not every conversation with friends needs to involve the latest update on your cancer journey. Visits with family don't need to revolve around cancer talk. Allow yourself to enjoy "off" times and not feel pressured to talk or share cancer things.
I have a steadfast rule that cancer talk is not allowed at the dinner table or at family gatherings. I politely remind folks that we can talk about that stuff later, but right now I want to enjoy the moment.
The struggle with setting boundaries
One place where I have struggled to draw the line is in support groups. I have really enjoyed being part of the young adult cancer community and I recently got involved in a group specifically for late-stage/chronic cancer patients. It has been a great place to talk to people who are actually going through the things I am going through.
However, being in support groups or on support pages can be draining and not great for my mental health. Reading posts and messages from people going through cancer is always difficult. Consuming that kind of material every single day will easily wear you down.
If being part of these groups starts to negatively impact my mental health or mood, I have no problem muting a conversation or hiding group posts until I feel comfortable rejoining. As helpful as a community can be, it can be just as helpful to step away from time to time.
The art of saying no
The best boundary you can create for yourself is also the simplest.
Politely, but firmly saying no to sharing your story, creating content, or responding to a support group. They say "No" is a complete sentence and it truly is. Cancer patients often feel pressured to be involved and give back to their community and supporters. Refusing an outing, or shutting down a conversation can be really difficult. Reminding yourself that your happiness and mental health comes first is key.
Setting boundaries unique to you
Every cancer patient will have different boundaries and lines drawn in the sand. As long as you take the time to clearly communicate and set expectations, friends, family, supporters and social media followers should respect your wishes.
Setting boundaries with bladder cancer can be difficult. Tell us about your experience in the comments below, or share your story with the community.
Have your views towards bladder removal changed since you were diagnosed?