Infighting in the Pain Community Made Me Leave Advocacy

(Editor’s note: The pain community lost another one of its advocates this week – not to chronic pain or illness, but to frustration and despair. In a Facebook post, Caylee Cresta said she would no longer be an advocate for people in pain because of chronic infighting and toxicity in the pain community.   

For those who don’t know Caylee, who we profiled in a 2018 PNN article, she is the creator of a series of videos on YouTube and TikTok that explore everything from makeup and relationships to the stigma faced by pain patients and their fear of pharmacists. Caylee’s entertaining videos offer a way for people outside the pain community to see how opioid hysteria has disrupted pain care for millions of patients. Her Facebook post is republished here with Caylee’s permission.) 

By Caylee Cresta 

For my fellow spoonies: I’m going to address this once, and once only. I hear you guys, I know you’re waiting for chronic pain content; but unfortunately, it’s not coming (at this time, at least).  

Rare disease, chronic pain, and the stigma surrounding opioid medications have plagued my life for over a decade at this point. I am not nearly alone in that, and hundreds of thousands of people are suffering daily. That cause is so close to my heart, and will forever be, and it is still something I deal with daily as well.  

When my life was turned upside down as a result of that stigma, I found a community advocating, fighting, and spreading awareness. I met some of my favorite people as a result and made what I believed at that time would be lifelong friends.  

However, that community is by far the most toxic I have ever seen in my life. There is a power struggle that will swallow any attempt at good, and an ugliness that will destroy progress. It will scare any true advocate enough to walk away. The lies I heard spread about myself, my character, and my family were enough to make me sick.

CAYLEE CRESTA

I want you to ask yourself, if someone is fighting for a cause they truly believe in, should they have to defend themselves more vehemently than the crisis at stake? The toxicity doesn’t allow anyone to focus solely on the action of advocacy, and you beat each other down more than any opposition ever could.  

I don’t expect a word of this to change anything, but I do feel as though I owe many of you an explanation for my absence. I can only hope that I will be able to create some change at some point on my own, but that is not a decision I will make today.  

I love creating more than anything in the world, and I let the toxicity of the chronic pain community rob me of that for years. The chronic pain community caused me more pain than the stigma I hoped to fight.  

I remember my first days in the chronic pain community clearly. I remember people saying that they never made any progress. While I hate to be blunt, I think the answer is abundantly clear.  

You will never have the numbers because you constantly let people be torn down and excommunicated. Your viscous behavior will take any passion for this cause and swallow it whole, all before spitting out the shell of someone who was once excited to advocate. You don’t see passion as inspiration, you see it as competition. 

I spent my own resources, offered my assistance to all, and spent hours in hopes of offering support and change, and instead I got hate. I see everyone post the suicide rate with grave concern, and yet you will encourage it with rumors, falsehood, and lies.  

The very people that once called asking for help became my enemy without a word, question, or otherwise. And while I could go on forever, I only ask this: If you see another passionate advocate excited to create change, protect them and don’t let them be destroyed as you did me.  

This isn’t about me, it’s about patients, but the chronic pain community seems too often be about anything but. 

If you take anything from this post, let it be this: you have to care more for this cause than you hate one another. And with this, I close that chapter of my life forever, and I wish you all continued love, happiness, and comfort.