Does my life hold value if you don't connect with the story of me?


We are all hardwired for connection, you have heard me say this time and time again because I truly believe that the connection we have to each other is the foundation of how we see, support and guide each other through our journeys.

What I have learned is that “who we are” and what is important to us, is way more important than “what we have” and what is important for us. For example...It is like loosing weight, let say you go to the doctor and he says the best thing you can do for yourself in the long run is loose 50lbs... Is it important for me to loose weight? Of course, but there is little to no chance that I even make it out of that office before I poo poo on that idea, cause yeah right whatever... On the other hand, if I have a wedding coming up and I am the maid of honor, all of a sudden there is urgency to loose the 50lbs so I can fit into that fantastic dress... Loosing weight becomes a journey with a destination and a prize at the end.

Our healthcare system was designed around disease and what is important for us, and was never focused on what is important to us, hence our connections we built around action steps and curing the disease not about how to live with it. Through this whole journey with Gulf War Illness, only one time has someone asked us how this disease is affecting our life. It wasn’t until then did I realize that we spent so much time trying to figure out how to manage it, we did not see that we were not living in spite of it. It became clear that we were looking for guidance as to how to live with it, as much as were looking for guidance on the disease process itself. The anger, frustration and conflict with our health care providers came from them not knowing/caring about our story and how it was impacting our life, therefor the lack of connection to who we are and what is important to use, did not allow us to trust them, confide in them, or have a partnership that would sustain us for the long haul.


By not understanding who were are, what’s important to us, what scares us and what we are grieving the loss of along the way, they were never able to understand why we are pushing back, the anger and sometimes the rage. The story they told themselves about us, was that we were belligerent, difficult and unreasonable. We got PTSD out of that adventure...what would it have been like if the story the told themselves was, scared, tired and desperate. What a different that would have made.

As Care Partners, our job is to connect the people we support to the things that are comfortable and familiar to them both physically and mentally. No matter if we are professional or family care partners, each of us write a story in the book of the people we support. How we show up matters, what we see matters and how we support matters to both our stories. Imagine if we started with tell me about you and how this is impacting your life and what scares the hell out of you about it... This statement right here says “we got you...” Would we all have different stories? Who I am matters more than what I have...




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