How to Deal With Letdowns in Your Awareness Efforts

As I shared in a previous article, rare disease advocacy can include writing and requesting proclamations. Proclamations can be made by organizations and at various levels of government.

In my experience, requesting a proclamation has been simple enough, especially if the proclamation language has already been created. Once the proclamation language is written, it can be saved as a template and submitted to any individual who would like to support it. This template can easily be updated and reused from year to year.

Joining forces with other patient advocates

I was fortunate to connect with other patient advocates who already had proclamations created and use the same proclamation language they developed for the causes they were already championing.

I joined forces with advocates for hereditary colon cancer syndromes, familial adenomatous polyposis (FAP), and ostomies. We celebrated when my state became the first to sign a state-level proclamation for Hereditary Colon Cancer Syndromes Awareness Week.

Celebrating the progress of our advocacy efforts

For the past few years, I have been submitting and receiving state-level proclamations for hereditary colon cancer syndromes, FAP, and ostomies. As our communities raise more awareness, additional advocates have joined these causes with proclamation requests and celebrations of these awareness weeks and days.

In 2023, I was astounded to discover how far-reaching our combined advocacy efforts for FAP Awareness Week had become. The Collaborative Group of the Americas on Inherited Gastrointestinal Cancer publicly recognized and promoted FAP Awareness Week! This was a huge celebration for the FAP community.

My state's proclamation policies changed

However, my state's proclamation policies changed. I learned that the governor will only approve health-related proclamations if they are state-wide health issues. My causes, including my rare disease, were too "specific" and too "detailed" for a proclamation from the governor because not enough people are affected by any of my 3 causes. Not even ostomies – where in the United States alone, there are approximately 725,000 to 1 million ostomates.¹

I was angry when I heard this explanation not only for my proclamations but also for the others that are health-related but not "state" relevant and were now denied after years of being approved.

Taking action and not giving up

Although I stayed angry for a couple of days, I quickly acted to notify communities, connections, and organizations I felt it necessary to inform. The more action I took, the more my anger began to reduce to a simmer, and the more I could take refuge in the community of other advocates. We will work together to continue to make changes and raise awareness and understanding of the importance, no matter how rare a health condition is.

When we experience such letdowns in our awareness efforts for our causes and our mere existence, it helps to not only connect with others who can empathize and rally with us but also find ways to recenter ourselves so that we can continue the fight. If we let others' dismissal stop our efforts, change will stop, too.

Do you have any experience with proclamations or other types of legislative advocacy? Share your experiences with our community in the comments below.