Being Your Own Advocate
President-Massachusetts Chapter of the National Marfan Foundation
Head-EDS Massachusetts and New England Support Group
“Wow..how many times have you or loved one or a friend been told something totally wrong about your condition from a doctor? Of course, I know the answer…many, many, many times.
The worst imaginable place to hear it is from an emergency room doctor. (I have been there, seen it-done that.) Having been down that road so many times, I realized I had to fine tune my skills for advocating for not only myself but for future patients who have rare disorders and face the blank look or worse yet, the attitude and ego issues.
Being your own advocate can not only improve the quality of your care in the future, but also provide your local caregivers/hospitals a clearer understanding of what your disorder/condition is and make it a little easier for the next rare disorder patient through their door
One of the first ways I began to advocate for myself was to pull together information on my condition(S) that were written by doctors/specialists/researchers working with and caring for these disorders.
The next step was to compile a complete outline of my health issues/diagnosis, etc in an outline form using my complete medical records. (which I strongly recommend having your medical records on a disc or flash drive) I basically took my medical records and made a trimmed down-chronological list (by year-by type-testing/ER visits/diagnosis/medications/etc) The outline format is easy to read and doctors can get a very clear picture of my medical history and my status. Once completed, your outline can be put onto a flash drive or disc for you to give to future doctors or if you are traveling and god forbid, have to go to an ER.
Being an advocate for myself also required me to be firm with my medical dealings but aways be respectful and keep calm. It is indeed easier to get what you want with sugar than it is with vinegar. (although I am always tempted to give a few beuts a kick in the butt.)
Another big piece to being your own advocate, is to seek out doctors who are willing to be supportive of your needs. It would be great to have a local doctor who was experienced in your condition but if they are not and they are wiling to learn and help you, it is an important step. These are the doctors that you want to provide with the research and Information specific to how you are affected. Also, it is wise to have them utilize the national experts in the specialty being reviewed.
In the ER, being your own advocate can be difficult since you are in bad shape. (of course) This is where you need to be very specific as to what is going on-what key information they should know in an ER setting-be respectful but firm in taking the right steps. It also helps to have someone advocate for you as well who understands your condition. They must know the short list of what to do and what not to do. This preparation is very important.
Being your own advocate in an educational setting is another important step in raising awareness and the quality of care of your condition within the medical community and the world around you.”
(-This will be covered in Part Two-.)
End of Part One – February 23, 2013 -Jon Rodis
Jon is also very active as:
Chair-Physician Awareness Committee(s) for Marfan and Ehlers-Danlos Syndrome(s)
National Disability Advocate for Rare Disorders
Member: Winthrop Disability Commission
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