I am a health advocate because I didn’t get one when I got my diagnosis for this unheard of disorder called dystonia. I didn’t get a tote bag filled with swag either and I could have really used an advocate right away to carry my imaginary water bottle, rubber wristband and American Apparel screened print t-shirt that exclaimed “I Have Dystonia and Everyone Knows What THAT Means!” printed on it. No…didn’t happen.
My Non-Advocate didn’t tell me to sign the release forms when I left the office because I would need the reports later when filing for Disability, either. In fact, I knew absolutely nothing, had no one around me that knew anything and had no idea whatsoever what to do with a diagnosis of something I should have at least heard of in my career of medical massage therapy and ten years of instructing Yoga.
It did not take long at all to figure out that what I needed and wanted most was, in fact, a “Health Advocate”.
I didn’t know that is what they are called, I just knew I needed someone to help me in SO many ways and I never found out how to “get one”. I needed words of support, encouragement and confidence. I needed resources given to me instead of being on hold in tears for how many months or years combined. I needed someone to help me learn how to communicate my physical and emotional feelings to the people around me in a way that helped them understand. I needed a place to BE, a place to talk to others who did recognize my scrambled thoughts and words, bizarre descriptions of a muscle spasm and how to laugh when I have fallen in the kitchen for the 100th time and never EVER just happen to have the cleaning spray in my hand for under the refrigerator. I needed someone to hold my hand and show me where these other people were who would understand me and become my support system while I worked on making the “Doctor System/Team/Support” I imagined existed as well. Turns out that a health advocate sometimes is needed to help with that task too. They are the extra voice and the extra strength we need because ours gets tired and stumbles or gets hyper and anxious. Our scared voices and bodies get accused/interpreted as representing psychological trauma and not a “real” neuromuscular disorder. An advocate helps teach us how to remove the “blame” away from us and require the knowledge and study to be placed back where it belongs on the Doctor! They help give us the confidence to trust our instincts in a place where that is all we have.
Health Advocates are like unicorn people with wands of knowledge and sparkles of grace who exude hugs through their eyes and words. Mythical people you lay in bed and wish for because friends and families and doctors don’t quite fill all the needs and wants or know how to get me to the place where others have the hope and answers and support right when it’s needed.
I have been an advocate for dystonia more than half the time I have been diagnosed with dystonia. I did not want anyone to feel alone, unsupported, abandoned or confused with no one to listen. Our Facebook support group just grew to be over 2000 people. Everyone who needs someone to listen can find another. No one is alone, no one asks questions without receiving an answer and no one has to look harder than a Google search now to find our group.
I am a health advocate because we should all get one with our diagnosis…. someone has to hold our papers and doctor office sweaters for us once in awhile.
It is an honor to be nominated for the 5th Annual Wego Health Awards Best in Show Advocating for Another and Best in Show Community Forum categories.
Lori Raines 2016