With the new year approaching I’ve been thinking of ways that I can be more involved with my health. Not the standard lose weight and exercise nonsense like most people have as a New Year’s resolution, but ways that I can contribute to my health and well-being journey.
I’ve been kind of stuck in a three-year rut since my official diagnosis in 2012.
Searching for a doctor in my state that has a clue about Dysautonomia and POTS is like finding a Unicorn! Most only know the basics because of the breakdown of the medical terminology but that’s it. Trying to get a physician to work with you and allow you to be involved in your care is not an easy task by any means. It’s extremely hard and frustrating.
How can you take control of your health and proper care of yourself when the doctors in charge don’t even know what to do with you?
Most just throw drugs at you and say “maybe this will help try it out.” I honestly feel like a guinea pig at times, but that’s all about to change. I’m done allowing myself to be mistreated and walked all over.
I’m taking back my life this year.
I’m firing any and all doctors that refuse to work with me or accept anything that I have researched from reputable sources. I recently posted on my Facebook page Face of Dysautonomia about the notorious “Google Mug“. It completely insulted and infuriated me. How dare a doctor think it’s a joke and act that way?
That post went viral and started a needed debate between doctors and patients. This debate spawned many reactions in the form of articles, both positive and negative. One article I posted after that called “A LETTER TO PATIENTS WITH CHRONIC DISEASE” was written by a doctor. It really hit home for me. The letter was originally published in 2010 but really helped me see and understand the mentality of a physician and how to navigate them to attain the best results for myself.
I’m done with sub-par care.
If they’re completely unwilling to learn then how can you expect them to help you? Move on and find a doctor that cares. Doctors are human and they don’t know all. They may not know a lot about dysautonomia, but if they’re willing to learn and work with me then they really are doing their best and I can’t knock them for it.
Thankfully, I just found my “Unicorn” and I’m extremely hopeful for my health in 2016 for the first time in my life.
Don’t give up trying to find a doctor. It may take time but you are worth it! Don’t ever allow them to shame you. You have the right to be taken seriously. Educate yourself about your illness and you’ll have the tools you need to find the right doctor for you.
What are your goals for 2016? Find us on Twitter with the #NewYearNewYou hashtag and don’t forget to share!
Stay tuned for more articles to come by Laurie who is struggling with Postural Orthostatic Tachyardia (POTS), Hypovolemia, Neurocardiogenic Syncope (NCS) and Orthostatic Hypotension (OH). She is very involved in the Dysautonomia community through The Dysautonomia Project, Standing Up to POTS, the Dysautonomia Advocacy Foundation and the Dysautonomia Support Network, to name a few!
