Helpful Coping Ideas and Personal Stories

How to Verbally Advocate for yourself and others on Facebook

~What makes for a good comment while trying to help others without forcing ourselves or our personal views upon their lives?

Advocacy basically means public support for or recommendation of particular cause or policy.

First to understand and accept every patient is different thus treatment and their body’s response to either medical and physical treatment and or surgery will be different based on the patients PERSONAL medical condition know and unknown. Giving someone your personal opinion of and or experiences can be helpful and or damaging. Which brings up the tough topic of Bashing…
Patient or Doctor Bashing is a HUGE, No No, and considered not only disrespectful but distasteful in Advocacy World. There is a reason why people and even Doctors (lets not forget they are human!) believe and act the way they do. Understanding why they respond or do a surgery a certain way is a conversation to be had and not judged.

Sharing a suggestion of testing to get diagnosed correctly and the sharing of a list of Chiari Specialist in the Neurosurgeon field is great. All the Neurosurgeons that are on the multitude of Chiari Groups for Chiari Specialist are known to be well versed in our related conditions.

Within the Advocacy groups there are not licensed medical doctors of the MD level and no one can speak as one (that I know of). Personal experience can lead to a better understanding and the ability to guide other patients or parents down the right path to get the correct medical care. I could not agree more with the importance of seeking a Chiari Specialist over just a normal Neurosurgeon, but we need to remember:

When we first get diagnosed not only are we in a lot of pain but also it’s beyond scary to hear and accept we need brain surgery to live….
…. hands turn make arrangement for a care/treatment plan to fallow through with, never mind trying to figure out how to pay for all of this. The mental exhaustion of taking all of this in can be over whelming and sometimes take time to process. We in the Advocacy world need to be sensitive to each others personal feelings and emotional well-being during this critical time. Loving support comes in different forms and levels. Keeping a positive frame of mind with ourselves while helping other will be evident in our suggestions to others. Just as our medical condition is unique also is an individuals path to get correct medical care based on ability to except and proses. You can lead a horse to water but you can not make it drink!

I would like to believe: We would all like to be our own Hero, but how would you like that “Hero” treat you? Even though the Advocacy world is guided by our very own personal experience and ability to understand all the crazy medical jargon, I believe our negative and personal opinions and “bashing” need to be kept off a public form.
No one wants to hang out with a Grump of Bump….
Positive thoughts, messages, and ability to care for others even when we do not agree with their actions is true advocacy. Even I have tough day and want to say a couple of things but we can teach others by being the example of the better person.
Being Part of the solution and not the problem.
Brenda “Bea” Yung

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