What is advocacy? Merriam-Webster describes it as the act or process of supporting a cause or proposal. Wikipedia further describes advocacy as an activity by an individual or group which aims to influence decisions within political, economic, and social systems and institutions. Advocacy can include many activities that a person or organization undertakes including media campaigns, public speaking, commissioning and publishing research. What does this mean to me as someone with chronic illness?
Chronic Illness is a beast to deal with as you probably know. It is difficult to find the specialists you need, to get the care you require, and the treatments to help make life more liveable. The problem that comes with this, is that we often face discrimination and difficulty accessing care within the medical community. Whether it be the high cost of a necessary medication, a specialist located out of state, or the inability to even access certain medicine. These reasons are why advocacy is vital for the chronic illness community.
Now you may be thinking, how can I advocate for my condition if I cannot even leave my house? It’s a good question and one that has stopped me until recently from getting involved. You do not have to be picketing outside of Washington to make a difference. Simply sharing your story is a great start. Social media platforms like Instagram, Facebook, and Twitter are a good way to get involved without exerting much physical effort.
Another great option is to take advantage of the websites that are already set up for advocating. They have links specifically for people to share their stories. Some of the ones I have participated in are NAMI, Chronic Disease Coalition, and The Mighty. You can even do a Google search for your specific illness and there are sites dedicated to advocating for that. I have written articles (you can find them under the My Published Articles tab), done surveys for the government, and shared my story. No amount of effort is too small.
Let’s face it. The chronic illness community needs to continue to stand up for itself. I used to think that my story wasn’t important enough for people to hear about, until someone messaged me on Instagram wanting to do a video on it. We all have a unique story, with a unique view. Only our collective voices is going to start making a change. Share your story, you’ll never know who will hear it.
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“Advocacy.” Merriam-Webster, Merriam-Webster, http://www.merriam-webster.com/dictionary/advocacy.
“Advocacy.” Wikipedia, Wikimedia Foundation, 1 Mar. 2019, en.wikipedia.org/wiki/Advocacy.