February 15, 2019 at 6:42 pm #11601Luisa PalazolaKeymaster
Being able to advocate for yourself is one of the most important tools I think anyone can have.
I can’t tell you the exact definition of what self-advocacy is, but I can tell you it’s a manner of recognizing, honoring, and upholding who you are and what you need to thrive. It’s also by no means easy or straight forward, and takes practice and time to figure out your approach.
But, at the base it’s knowing your self worth and trusting yourself. It’s knowing that when something doesn’t sit right with you, you have a voice — despite the power complexes that surround you, that slyly whisper that you don’t have authority or power.
But, when it comes to your body and your mind, you have the ultimate authority. And, ideally everyone should feel that way. But, like I said it’s hard to feel empowered, especially when you feel like you don’t have any solid reason to be right.
As a person with a chronic illness like cystic fibrosis, you’re actually confronted with your mind and body. When I say confronted, I mean you have little options other than to deal with your body or mind. You become so aware of what works for you, that when things get wonky you have to approach it head on. I think this kind of experience with a body that works differently than most, starts to become a long term learning event.
You learn to talk to “authority” figures like doctors, insurance companies, and college professors. They become less like god figures (though, insurance companies are a forum topic in themselves) and more like humans.
You also become less afraid of retribution. And with time, practice, and trust in yourself — it gets easier.
I think the first time I openly defended and advocated for myself was when I was like 13 years old — I was leaving a restaurant patio and there was a woman smoking. I started coughing and the woman scathed something along the lines of “Damn it, I’m trying to smoke here xyz” and without quite realizing what I was doing, I turned around and went to her table to say “I have Cystic Fibrosis and I’m sorry my coughing bothers you, but you’re cigarettes bother my lungs.” And, I think she was pretty taken aback, and didn’t say anything.
I’m 25 and I’ve had a lot of moments where I didn’t know what overcame me, and was direct and straightforward in defending myself. But, there have been a lot of moments where I had to muster up the courage to do what I knew what was right. And in the moments where I’m mustering my courage, I’ve learned that if I ask myself
“Am I going to regret not saying anything more than saying something more?”
And if I can say I’m going to regret not saying anything, I say a small prayer to the Universe, and just tackle it.
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