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The Struggle of Advocating for Chronic and Rare Illnesses

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There comes a point in your sickness journey, whether as a patient, supporter or caregiver, where you’ve had enough of the lack of awareness for your specific condition(s). You’re left with a rarely-known diagnosis and prescribed non-FDA approved treatments that may either offer you miraculous relief or exacerbate your symptoms. The choice is yours. You’re one of the lucky ones if you have received a correct diagnosis in the first place, while some wait through years and years of being misdiagnosed. How can we stop this? Through advocating. However, the road to advocacy is a daunting, everlasting ride filled with many unsuspecting potholes and u-turns.

I recently attended a leadership conference for rare diseases and how to jumpstart an advocacy project. Unfortunately, I was not able to stay during the entire conference due to the exhausting mishaps of my own rarely-known illness (ironic, right?). But while I was there I was able to gather helpful information and toolkits on how to advocate. I also communicated with others who had rare illnesses like me, and we all had one thing in common – we are sick people who need help. My heart ached for the attendees who had all these illnesses I’ve never even heard of. Some didn’t even have a diagnosis yet. The conference offered great points, but I’ve noticed a few things that could possibly hinder the chronic illness community.


We first discussed one of our roles in getting our illnesses known – through participating in clinical trials, mostly with pharmaceuticals. A major problem with people with many illnesses is that we often react to everything. Not only that, it seemed as though they were highly encouraging us to participate in these pharmaceutical trials, which is great in a way, but it made me believe (as well as some other conference participators) that they were actually pushing us to participate, not just for new possible treatments for the patients, but for the pharmacies’ own gain.

Another roadblock for advocacy is little funds to create fundraising events. We’re chronically ill, meaning most of us are already high in medical debt due to pricey medications, hospital stays and doctor appointments. Not to mention insurance – it is expensive! Because a lot of my fellow spoonies have rarely-known disorders, they hardly receive funding from federal programs, which makes it more difficult to arrange an event with the higher-ups.

Going along with the lack of funding, traveling to conferences related to your certain illness poses difficulties. When a popular non-profit group releases an event or conference date, chances are the location is over 500 miles from your house and many of us cannot afford plane tickets, bus fares, hotel rates, etc. when it comes to traveling long distances. Because the locations are so far away, patients are not able to advocate for their cause.

So, what can you do as an individual to raise awareness for your illness or disease for little to no cost?

1. Work with non-profits to request an awareness month proclamation for your illness or disease from your county or state.

2. Print out brochures explaining (with accurate information and sources)
your illness or disease and take them to local doctors’ offices and hospitals. Hand them out to the doctors or nurses or even ask to leave them in the waiting room!

3. Request to write articles for your local newspaper or bulletin board explaining your illness or disease.

4. Utilize online fundraising tools like GoFundMe to raise funds to send to your non-profit of choice.

5. Write! Write! Write! Write articles or blogs and share them on social media! Twitter, Facebook, Blogger and more.

In conclusion, it is difficult and time-consuming to advocate for your cause. But the payoff is absolutely worth it! If you can educate just one person on your advocacy journey, your dedication will been fulfilled.

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Thinkstock photo via Madedee.

Originally published: June 19, 2017
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