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.

The New Face of the Opioid Crisis

By Pat Anson, Editor

Caylee Cresta doesn’t have any illusions about being the next Internet star or YouTube sensation. But the 23-minute video she posted on what it’s like to be a chronic pain patient during an age of opioid hysteria has become a hit in the pain community.

“This video should be made to go viral,” one fan said.

“Caylee you did an amazing, persuasive presentation. Maybe you should be a lobbyist!” another one wrote.

“Single best piece of chronic pain patient advocacy I have ever seen. Absolutely brilliant!” wrote Chuck Malinowski.

Caylee’s video is not addressed to the pain community, but to the public at large. The 26-year old Massachusetts woman with fiery red hair looks directly into the camera and earnestly asks people to set aside their misconceptions about pain, addiction and the opioid crisis.

“I do not suffer from addiction and yet stigma will tell you that I do.  And that is a myth that we are going to change,” she says. “Don’t ever brush off the plight of the chronically ill because your lives can change in an instant, just as ours have.

“The fight against opiates is an uneducated one. This is a movement that lacks understanding in its most basic form. Every lawmaker is taking on this fight without ever consulting even a single chronically ill person. What does that mean? That means that the people who depend on these medications aren’t even being considered when taking them away.”

In her video, Caylee spends little time discussing her own experience as a pain patient. While still in high school, Caylee developed a rare and incurable neurological disorder called Stiff-person syndrome, which is characterized by strong muscle spasms and stiffness. The spams are so severe her lungs have collapsed twice.

“I’ll get such strong spasms in my throat and chest cavity that they create so much air that can’t escape (my lungs) that it just made them literally pop,” she told PNN. “My muscle spasms can break my bones, they’ll get that strong.”

Caylee’s symptoms were usually dismissed by doctors and it took years for her to get a proper diagnosis. Last year, a doctor at a pain clinic dropped her as a patient after getting a warning letter from Medicare that she was prescribing too many opioids. Caylee went without opioids for months, which is when her lungs burst.

Living in Fear

Although Massachusetts has a reputation as having some of the best healthcare in the world, Caylee now drives 3 hours one-way to see a neurologist in Connecticut.

“Any other doctor that I’ve seen over the years has literally looked at me and in one way or another and said, ‘Your prognosis is so dim. It’s so rare.’ They’re not even willing to take me on as a patient. My doctor has stuck by me and tried everything there is to try,” she says. 

Caylee has tried stem cells, chemotherapy and many other treatments. The only thing that works is opioid medication. Although she is once again able to get prescriptions for opioids, she often has trouble getting them filled. She and her husband went to 20 pharmacies one day before finding a pharmacist willing to fill her script.

“You live every single day in fear.  Every time you fill your prescription you go, okay, I’m going to have a life for another month. But you live that whole month with such anxiety and wondering what’s going to happen next,” she said. 

Caylee hopes her YouTube video will help educate the public about the daily challenges of being in pain and give some hope to pain sufferers.

“I want to fight for people going through this. I truly want to fight for them. I just want to let people know that they’re not alone. I want them to know that we’re all in this together,” says Caylee.

“What is probably the most humbling is when I get messages like ‘I would do anything for the world to be able to see this’ or ‘I would do anything for this to go viral and for people to understand what we go through.’ When I get messages like that, that let me know that these people feel like somebody is speaking for them, that touches me in a way that I can’t even explain.”