Patient Advocate

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!

Patient Advocate Goals

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:

  1. 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.
  2. Normalize conversations on mental health and IBD. – Two very sensitive topics.
  3. 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!


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11 thoughts on “What is Your Advocacy Goal

  • Great post! And this advocacy is really important, thanks for sharing! 🙂

  • Shawntel, you are so inspirational! I can’t wait to take a look through your site after leaving this comment! I think its amazing that you’re trying to normalize the conversation around the illnesses you deal with. I can imagine that it’s often a difficult road, but you do it with grace and poise! I’m excited you are a part of my FB group, I’m excited to keep up with you!


  • “It’s only healthy to identify realistic goals with anything you partake in…” SO true and so well said.

  • It’s so cool that you got to go to a conference! I love this post!

  • Been asking some of these questions to myself too! Have to take a moment and figure out my goals. Thanks so much for this!

  • Been asking some of these questions to myself too! Have to take a moment and figure out my goals. Thanks so much for this awesome post!

  • Plan your goals make the success journey easy and interested it’s a very nice post i love planning and having SMART goals

  • This was such a good reminder, sometimes we just exist having no idea of what we really want to achieve in life. Am so glad you have chosen to bring awareness to that condition, what you are doing is so noble. I wish you the best.

  • A great post. I write about meeting adversity/illness with positive attitude and a grateful frame of mind. I have written too, about advocacy and what it means to leave your hurt behind and get to the source of your meeting. Making health better for all is a wonderful goal when meeting with regards to your health/mental health. Thank you for sharing this!

  • Goal setting is something I enjoy doing. I like seeing different ways to take go about it. Great post.

  • Charrise

    So nice you got to attend this conference, this was a nice post thanks for sharing

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