Last weekend I had the honor of attending another Patient Advisory Board meeting, this time in San Fransisco, CA. We discussed a slew of different topics related to each individual’s journey from pre-diagnosis to present day. We also talked about some of the major gaps in healthcare during each stage and brainstormed ways they can be improved upon. I love meetings and this particular kind of work because I love not only sharing my story and the problems Ulcerative Colitis patients face, but also being a part of the solution.
This particular meeting, more than any before, really got me thinking: What is my ultimate advocacy goal?
While attending the HealthEVoices Conference in Chicago, back in April, I learned the difference between being a Patient Advocate and a Patient Activist and how to grow in both areas. – Don’t get me wrong, I’m aware of what activism is, but I’ve always been very intimidated by the subject. One thing that stood out to me was Christel Marchand Aprigliano‘s (of The Perfect D Blog) explanation of her journey into activism. I was shocked to learn that not everyone who has a passion for politics and activism is born with that interest. I felt empowered knowing I’m not the only person who’s intimidated by the topic and can admittedly say there are a lot of things about politics and healthcare that I still just don’t understand. – It’s empowering because the people who were once in the place I am today have grown so much from it and have become key patient advocates, activists and social media influencers, so it seems there’s hope for little old me!
What is Your Ultimate Goal?
It’s only healthy to identify realistic goals with anything you partake in, whether it’s advocacy, activism efforts or something entirely different. Identifying goals helps you to stay organized and committed. – Technically the title of this article is misleading. It’s not limited to certain goals, it’s my goals in general: as an Ulcerative Colitis patient, as a daughter of someone who suffers from Schizophrenia.
So with my current and future works I hope to achieve the following:
- Show how Ulcerative Colitis extends beyond the bathroom. – Sure, I could give a general blanket statement, “to raise awareness.” – But I want more than that. I don’t just want people to know the name of my condition, I want people to understand the effects of the condition and understand the severity of living with constant inflammation.
- Normalize conversations on mental health and IBD. – Two very sensitive topics.
- Learn more about politics and healthcare to be a more active in my community and influence change.
Of course these aren’t my only goals but everyone needs a strong foundation to grow from.
Before you go, I have two very exciting announcements! 1. I will be hosting my very first IBD Twitter chat with Aaron Blocker and Improve Care Now this Wednesday at 8PM EST! Join us by using the hashtag #IBDSC at that time. You can also visit the Chronically Strong Events page to get more information and add it to your Facebook calendar. 2. I have created a group, We Are Chronically Strong, for patients and caregivers. Feel free to join! It’s 100% support and positivity. Feel free to promote your blogs and products you think will benefit others. As always, thanks for reading!