This topic feels like a natural follow up to last week’s blog, Cancer is not just a medical problem. But before we get into the subject, I just want to take a moment to share a personal celebration with you…

This is my 100th blog!!!!

I started Creative Transformations 2 years and 6 days ago (more or less!), and when I began I knew that in addition services I offer, I wanted to write a weekly blog that would explore the emotional healing process of cancer survivors. It feels really good to know that thus far I have met my goal, and that hopefully these blogs have had a positive impact on you, my readers. Thanks for being there and for celebrating this moment with me.

Self advocacy is an important part of cancer treatment because cancer treatment is an ever evolving process, and it involves the expertise and input of multiple providers. Research and statistics about treatment approaches and efficacy are important, yet ultimately we are all unique and thus we are the experts on our body, mind, spirit and sense of self. While we may feel trepidations about it, we hold the role of expert at the table, and hopefully your treatment team embraces that.

Yet being an advocate for yourself is often easier said than done.  Here are some common barriers that complicate this process:

  • the stress level that comes with having a cancer diagnosis– the shock, dismay, anger, fear that we feel impacts our ability to process information and communicate our thoughts, feelings, and concerns
  • the whack cancer takes to our sense of self confidence– in part due to the fact that it directly challenges any notion of control that we might have felt we had prior to those awful words
  • the willingness of our treatment team to view us as an expert of our own experience– research shows that having trust in your providers is important to the treatment experience and outcome, so if providers prefer a top-down, hierarchical approach, they may be unwilling to see you as an expert on you. Sometimes we can change our team, sometimes we can’t.  This post is designed to offer guidance either way.
  • our personality traits and communication styles– for someone who is more passive, feeling able to speak up and be direct about your needs, especially when you feel vulnerable, is a true challenge when you add cancer to the mix. For those who are more aggressive, power struggles often emerge and impede clear communication and processing of the information being shared.  Even those of us who are comfortable being assertive can struggle.  The psychological reasons why will be explored below.

Beyond the above mentioned barriers, lie the underlying psychological components that often come up when someone is thinking about advocating for themselves:

  • self doubt– or trusting your instinct in the face of an authority figure
  • self worth– or believing in your right to ask questions, challenge plans, asking for second opinions, etc.
  • vulnerability– or having to tolerate uncertainty while asserting a concern, need, opinion, etc.
  • feeling overwhelmed– this is an overarching feeling coming from many angles, but one particular cause of concern that is directly related to advocacy is the necessity of being able to process and understand the information related to the disease and treatment, while also needing to make major life decisions that are incredibly time sensitive
  • fear of offending, angering or risking the relationship with your provider, someone who is essential to your survival and wellbeing– this is especially challenging if you do not have a good support system and/or there is limited choices for providers in your area
  • guilt or shame about having cancer in the first place, especially if we feel like our own choices/actions were “responsible” for creating the illness

And so forth.  Just like a reality show, it always looks easier from the viewpoint of the spectator, and thus can further impact our ability to be our own advocates.

This doesn’t mean that it is hopeless at all, it just highlights the importance of seeking support ASAP. Local cancer community centers, the social worker connected to your treatment team, therapists and coaches who specialize in cancer, are all options to consider for getting support.

As a cancer coach, the impact of my knowledge and personal experience always helps to ground my clients, and together we craft a plan to build the muscle of self advocacy.  I know it can get old to think of cancer as a transformative experience, but I do see it time and time again. While we may not have asked for it, celebrating how we become stronger in the face of adversity is important.

– Stephanie McLeod-Estevez, LCPC, is an art therapist and breast cancer survivor, and a former oncology counselor at the Dempsey Center. She began Creative Transformations to help others who are healing from a life threatening illness or injury. Through Creative Transformations, she works with people in person and online to offer cancer coaching, an Art as Therapy program, workshops, and this weekly blog. Check out the individual packages. Sign up today so you never miss a blog and find us on Facebook, Twitter and Instagram.