(The title may seem misleading at the moment. By the completion of this article, it will make more sense. This is a work in progress. ) While working on this article, I’m publishing early to allow for comments and ideas if anyone is interested in sharing to highlight the issues with our medical system. I can only share my own experience and what I’ve witnessed. So if you have anything you want me to mention that needs change, please comment so I can look into it and possibly add to the article.
Our system needs to change. It’s not working for millions of people and lack of awareness of the brokenness of our system isn’t helping. Repeating the same mistakes isn’t helping. Even with studies highlighting some of the issues leading to this disfunction change is not occurring.
I want to change the system. I want to bring awareness to some of the problems within our medical system and highlight some ways to bring change so we can avoid making these same mistakes that lead patients to taking things into their own hands; to avoid leaving patients in pain, limit their suffering, offer support and fix the errors that lead to confusion, dismissals and lack of care, especially to patients who don’t fit into neat little boxes. And maybe to bring attention to the fact that too many of us are suffering from chronic illnesses and conditions that aren’t as rare as they purpose.
I want to share my story and my son’s story as well to highlight the difficulties and challenges that have led to a breakdown in patient care. My story is not unique. I’ve discovered so many of us who suffer the same. This should not happen. We need change.
Textbooks are great for basic knowledge. But textbooks lack an essential component to doctors who treat or come upon patients suffering with unique symptoms or simply chronic conditions. What I’ve learned, simply by joining patients groups for various diseases and disorders, is that no two patients are completely alike and that textbook knowledge doesn’t come close to understanding what it is that patients suffer with on a daily basis which leads to a great misunderstanding and often dismissals of patients concerns. For example, I was once told, “MS doesn’t cause pain,” by a physical therapist. Join any Facebook or community group and see for yourself how many MS patients suffer with chronic pain, as well as how many have been told what I was, “MS doesn’t cause pain.”
We need a website set up for each disease or condition. A database that patients can access and share their symptoms that can be cataloged and graphed. It can have oversight and a team set up to verify information, diagnosis, ect. A separate site can be set up for those undiagnosed to share symptoms and other information. There’s a lot to go into it but it can be done and managed with access given to researchers, doctor’s, patients in some form or another. A section set up for patient chat with the understanding that researchers and doctor’s can have access to read, monitor and understand the day to day life of patients who suffer with whatever they specialize in so they can draw a better understanding beyond what the textbooks teach. Researchers and textbook writers can then take this information to expand upon the current information being taught in medical school. We need to get rid of the idea that doctor’s should always assume patients are horses, ignoring the zebra standing in front of them. We have way too many zebras in our world today and many of us are not being seen, heard, understood or taken care of.
This is a work in progress. I plan to edit and add to this blog as I go until I determine how I want to proceed in shaping and sharing my story. I thought about simply saving it as a draft but decided to publish it for now to allow input from anyone wanting to share their ideas, struggles or their own story.
It may take me a while to bring this to completion but it’s my goal to do just that. Being disabled is tough. In addition I’m taking care of a child who has his own disabilities.
Parts may be written offline and incorporated later. Eventually, I’m looking to publish this work and advocate for this change our medical system needs.