Navigating Epilepsy: The Road Ahead

Who is my best advocate?

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YOU are!!!

What is self-advocacy?

The term “self-advocacy” refers to the idea or movement that people with illness and/or conditions, have the right to take control of their own lives, including being in charge of their own care in the medical system.  It is about people speaking up for themselves.  It acknowledges that although we all need help and support form others at times, as individuals we are entitled to be in control of our lives, our medical care, and our personal and professional lives.  Self-advocacy is empowerment.  Self-advocacy is problem solving.  Self-advocacy is your power to help solve problems and reach the best possible solutions for you.  It is your ability, and your right to ask questions, seek various opinions, conduct your own relevant research, and do everything in your power to ensure your needs are met.  More than anything, self-advocacy is about finding and using your voice.

Why is self-advocacy important?

Self-advocacy is important because it is essential to ensuring that you get the best medical & mental treatments, as well as appropriate school and work accommodations.  It is also essential because it can help you locate and secure relevant social resources that may be available to you, and it ensure that all your needs related to epilepsy, not just medical ones, will be taken seriously and met.  “The system” is often quite complicated and self-advocacy can help you become more familiar with it so that you can better navigate it and obtain what you need and deserve.

How do I go about becoming my own advocate?

The most important step in self-advocacy is believing in your ability to do it.  Then, you need to get organized:

  • Clearly define your issue or concern in a manner that is clear and succinct, but that captures the entire issue at hand.  For example: “I want to get special education services at the school for my child who has epilepsy.”
  • Do your research! Go online and look for resources, ask people who have been in the similar situation, go to your local library and look for books or articles on the issue at hand, ask questions!  The bottom line is that if you don’t know what you are asking for, chances are slim that you will get it.   Remember, the more options you have to begin with, the more likely that at least one of those will work out.
    • A good place to start your search is at the Epilepsy Foundation (http://epilepsyfoundation.org/), they have a large directory of articles and resources related to various topics.
  • Now that you are armed with information, create a summary statement that clearly combines both the issue and the solution you’d like to see implemented.  If appropriate, cite appropriate resources or case examples.
  • Practice!  Speaking you mind can often be difficult, especially when we are talking to “experts” (e.g., doctors) or “superiors” (e.g., school principle), so it is essential that you practice what you want to say and how you want to say it.  Remember, communication is not only based on the words that come out of your mouth, but also the way you carry yourself,  your make eye-contact, your mannerisms and all sort of nonverbal cues (e.g., refrain from rolling your eyes when frustrated or sinking into your chair when feeling insecure).  So practice with someone you trust, practice in front of a mirror, or even film/record yourself.  You know the old saying, practice makes perfect!
  • Have faith in yourself! Speaking up for yourself can be difficult at first, but it gets easier every time.
  • And lastly, remember that change does not always come on the first trial.  If you are not satisfied with the outcome, remember that you can, and should, try again.  Examine your tactic the first time around, determine if there is anything you should change or improve upon and try again!

And remember, self-advocacy is what can get you from needing something to actually getting it!

 

“Most powerful is he who has himself in his own power” (Seneca, ancient Roman philosopher)

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