Expanding Presence, Gaining Visibility, and Advocating For Myself

Many of us in chronic disease communities are well connected on social media and often share our personal experiences with our health and bring awareness to our conditions and obstacles in obtaining the best care.

I have taken this journey through advocacy and more recently started expanding my efforts beyond the cystic fibrosis and rare disease communities of which I am a part. I am now collaborating with other advocates with different conditions, working with healthcare companies to contribute the patient perspective to improve trials, treatments, and services, and presenting and speaking on the importance of those receiving healthcare to be involved in the development of treatments together with doctors and healthcare organizations.

Through my own experiences I have learned how to expand my advocacy presence, gain more visibility, and be a stronger advocate for myself. I am passionate about empowering others to do the same. In this article, I share some tips and ideas for other advocates on how to navigate your own journey at whatever point you are – either just beginning to step into the advocacy space with a new diagnosis, or finding your voice and learning to empower others as well.

Educate yourself on new research and your condition

Knowing about our health and the new advancements that are happening in research and care is the most important part of being somebody who can regularly share this information with others. Not only does it make us more informed about our disease, but it makes us better prepared for conversations with our doctors, as well as sharing and providing valuable information to other people.

Getting involved with advocacy organizations

Initially I volunteered quite a bit with the CF Foundation. Advocacy organizations provide opportunities to share our stories and our experiences. Engaging with them also is a benefit the broader community because we are helping these organizations understand the needs of patients which in turn helps us individually. They are also a great resource to connect us to many other people in our disease communities.

Create a platform to share your journey and accomplishments

Whether this is a website or a social media presence, it’s important to be consistently making content and being a voice that other people can see and hear. The more that your content and work is viewed, the more that it builds your credibility as an advocate.

Networking builds relationships

Messaging and connecting with people through Instagram, Facebook, and especially LinkedIn, is very important in developing connections within the healthcare industry and other advocates. LinkedIn is best for creating a more professional presence. Networking in general is how people get to know you personally, relate to you, and learn about your passion for the patient and community voice.

Don't compare yourself to others

Whether it’s comparing yourself to others with your condition or just other advocates, this can be detrimental to your self-esteem and disposition. Rather, be inspired by others and learn from them. That's how you're going to become better in your advocacy efforts.

It’s also important to give yourself grace if maybe you aren't reaching as many people as you'd like or you haven't been given an opportunity recently to share your stories or your experiences – know that it is okay. As long as you feel that you’re positively contributing to improving your own health, or that you are providing value to your community, that is all that matters!