Spoonie Advocacy

The problem the chronic illness community faces has so many levels it’s hard to keep track of. Every disease is different but also similar. Every patient is different but also similar. Every challenge is different but also similar. And every day there are new patients who are diagnosed with something, and now have to begin the process of learning a new life.

Why is patient advocacy so important to me? This is a question I get asked all the time. Normally my answer is quick and to the point, I like to help people and do what I can. But the real reasons are much deeper than that. The real reason is because I’ve lived a life filled with more challenges than anyone ever wants to face. And now I want to help others deal with the adversities that they will face as well.

This is where I want to help others. Learning a new way of life, no matter what there challenges and no matter how far along they are in their journey with chronic illness, there is always more we can learn. There are always new ways of tackling a problem we all face and I’d like to help shorten the learning curve in these areas.

So many times we are diagnosed and thrown back into the real world like nothing happened. We are supposed to instantly know how to live with the challenge of a new disease, and be a completely normal part of society at the same time (or many times we are looked at as failures). This shouldn’t happen and why there should be more resources devoted to helping patients learn their new normal.

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