This blog has come about out of the necessity to be understood; to try and illustrate, through words, the reality my daughter and I live. This is not an up beat blog. No cheerful stiff upper lip encouragement, or hopeful dangling carrots here. This is a chronicle of our journey through the hellish fire that is our lives. In writing this I wish to both illuminate and educate, as well as make available the latest in medical research and therapies. This is not a blog simply about Ehlers-Danlos Hypermobility Type, but also about the multiple systemic diseases and conditions that go along with it. No, I do not have the answers, nor the cure, but I do have extensive experience with not only being chronically ill myself, but raising a chronically ill child at the same time, mostly on my own.

Wednesday, May 25, 2016

The Gauntlet

Everyone has an opinion of what you are going through and experiencing. Some are good hearted and attempting to assist, but often they do not understand that all they are doing is ignoring what YOU say and end up invalidating your own truth. Some just like being in control, or contrary, or simply "right". Some, and these can be the worst, are experts on the subject or in that field or tradition, and they simply talk over you, sweeping away with a irreverent hand your attempts to disagree and convey what it is you are experiencing and what you know. I find this true most often with doctors. Every new doctor I see brings anxiety and stress over the anticipation of yet again training and educating a new doctor. This is particularly difficult if the doctor is just evaluating your condition, such as for a disability claim.

All in all it can feel like you are running a gauntlet between bombarding opinions, expertise, research (or lack there of), folklore, current or old assumptions, that you no longer know what to think or how you feel. At some point you just have to simply trust your own personal learned knowledge and experience when it comes to you and your own body. This is something we, especially women, are usually taught not to do. Often trusting ourselves and our perception of our reality is badgered, even beaten out of us, especially by those in authority, and/or sanctified institutions, like the medical community. Trusting what you know to be true for you is not only important and healthy, but can save your life. No one lives in your body but yourself, and in the end you are the expert, the authority when it comes down to it. Yes, you need to be open minded, flexible, and willing to try new things, but you are still the authority over your life and your reality as you experience it. Nobody else has lived your life, learned what you have learned, been where you have, know what you know, to the deep intimate and viscera level, with you and your body, that you have. Be open to self examination, self truth, and honesty, as well as to the possibility of being incorrect, or needing to learn more, or a different point of view, but never, ever give up your personal authority, and autonomy. That has been a hard lesson to learn for myself, else self doubt, anxiety, and chronic searching outside of your self for the answers, rather than trusting what is with in, will plague your life.

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