Staying True To Yourself in the World of Advocacy

For as long as I remember, since starting topical steroid withdrawal back in 2014, I have been a very outspoken advocate. I shared my story of topical steroid withdrawal and eczema, among other personal struggles.

How did I start advocating?

I couldn’t tell you what it was that drew me to start to share my story. Especially when it comes to my photos of my raw wounded self - right out in the open. Initially, it was like another “force” took over me and was working through me. I was certain sharing my journey was the right thing to do. To everyone's surprise, I posted photos of myself in my most vulnerable moments. Most of the time, with my skin completely open and raw, was crying in the bath tub trying to cool down my skin, and even when I lost my hair and had to shave the last bit I had of it left. I put it all out there for the world to see.

Did I think anything would happen?

In all honesty, I never had much intention or expectations behind sharing my story. I was simply hoping to at least help one person. At the end of the day, that is still my goal to this day. But I never even imagined I’d be here today, still writing about it and a part of this wonderful community of advocates.

What has advocacy looked like?

Over these past 9 years now, I have interacted and connected with many people and groups. I’ve worked on many different projects, both behind the scenes and on the “front lines,” so to speak. This includes both topical steroid withdrawal and eczema, along with others.

Unfortunately through that, I’ve also been exposed to a lot of corruption within those communities. In this capitalist society, many people at the “top” tend to be in it just for the money, glory, praise, attention, and not the cause. I have seen good people go from sharing from their hearts to help others, to being corrupted by greed and money. This has been a double edged sword when being so active in advocacy - especially "behind the scenes."

How has it changed my approach?

While I absolutely enjoy advocating, and will continue to do it, I have realized I have to be a lot more careful when deciding who to work with and have relations with. It has been a hard lesson in boundaries, as well as trust and discernment. There are so many incredible people in these communities, people who truly advocate from the heart and soul, with no hidden agendas. Those are the people that continue to inspire me, and keep me going on my own journey.

Patient advocacy isn’t always an easy job, especially when you’re both on the “front lines,” and “behind the scenes.” I have been betrayed and felt used by many people who I thought were my friends and were truly in it for the cause. But I have also made connections with incredible souls who simply want to share their story to help others and spread love.

How can you stay true to yourself?

In advocacy, and in life, it’s so important to discern what is important to you and what you stand for, as well as the kind of people you want to have around you. The right people will be there no matter what, fuel you, and cheer you on. And the “wrong” people… well; they will absolutely drain you and take everything they can from you, if you let them, and won’t think twice about it. So surround yourself with the good ones - the ones who share and help from the heart. Not out of other agendas… whatever they may be.

Staying true to your own self and your heart and soul are most important. Sometimes it’s easy to lose sight of that, especially when sharing our story publicly and advocating for a cause. But losing parts of your own self for anything or anyone isn’t worth the pain it comes with.

Stay true to you. The most beautiful impacts on the world are created from the heart and from a truly authentic place.