Psoriasis and Social Media: Avoiding 'Miracle Cures' and Finding Community

Social media can be an incredible place to find support, but it can also be full of salespeople selling snake oil.

When your psoriasis is at its worst — red, cracked, peeling, itchy, spotty, inflamed, dry, flaky, or all of the above — it’s only natural to wish for something, anything that could help.

It can feel like a desperate situation. A desperate and lonely situation.

Nighttime used to be the worst for me. I would find myself so desperate for relief from the itch, but trying not to wake up my partner. At the same time, I would feel so alone. I’d lie there just wishing I had someone to talk with, someone who understood and could help.

In the past, in my darkest moments, I would find myself dreaming of a miracle cure. I imagined a tiny pill taken once daily that relieved every symptom and cleared my skin to perfection.

Was that too much to ask? Yeah, maybe.

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The promise of a ‘cure’

Those of us living with psoriasis are well aware that it’s chronic. Still, it can be tough to come to terms with this aspect of the condition, and we may never stop dreaming about a possible “cure.”

That’s why, on social media, those of us living with chronic conditions who are up late scrolling desperately for relief and a sense of community, can be easy prey to vultures trolling in comment sections. Bots, real people, and companies all send endless direct messages with a claim to a cure.

Many people will ignore these bots, knowing there is no cure or a one-size-fits-all answer to their condition, but sometimes, out of curiosity or sheer desperation, you can’t help but click the link.

I’ve found myself, on occasion, perusing the profile of the message’s sender. I’ve dug a little deeper and found some pretty convincing before and after pictures.

Sometimes, there are even testimonials from people “just like you.” I’ve scrolled through square after square of “real people” who have used this “miracle cure”.

These spam accounts can be found in every nook and cranny of every social media platform out there. These accounts offer a “cure” for a multitude of conditions, some even “cure” several conditions at once.

The photos used as proof often feature influencers sharing their psoriasis journey. Usually, these photos are used without consent or permission from the influencer. Despite the harmful nature of these accounts, little is done to remove or prevent these spam accounts from taking advantage of social media users.

The dark side of social media

If a cure was available, I’m sure it would be highly sought after, promoted by pharmaceutical companies, and prescribed by qualified doctors. These messages, however, never come from medical doctors spreading word of these cures.

Sometimes, it seems like someone’s job to dangle a hook into the pond of hashtags in the hope that a desperate, pained soul bites. And they do, and the cycle continues.

It makes me so angry that social media has very little regulation to deal with this predatory type of behavior, especially when it comes to people’s health.

What may seem like a harmless offer or ad for another random soap, cream, or lotion, is actually companies selling something much more dangerous: false hope.

This isn’t a new phenomenon brought about by modern technology and social media. Still, the advancements in worldwide communication and data helping companies identify people with chronic conditions has exacerbated the issue.

The practice of selling an untested, unverified health solution has been around for as long as people have sought medical help. Ever heard of a “snake oil salesmen“? This term has been around for decades to describe someone selling false cures or fraudulent remedies.

Social media is full of salespeople selling snake oil.

Social media as a place for meaningful connections

There are still so many positives to connecting with an online community on social media. Want to feel less alone? Want to meet others going through exactly what you’re going through? Want to hear from people who can actually say, “Hey I get it”?

Well, the online psoriasis community does all of that and more. When I was hospitalized in 2015 with pustular psoriasis, I felt alone, not knowing anyone who had experienced the same condition. The first thing I thought to do was to check out social media to find others in the same boat.

What I found has led to online and real-life friendships, and it’s helped me feel like I’m a part of a global community. Before, I didn’t even know this world existed.

I was able to connect with fellow psoriasis warriors online, and they gave me a haven of hope. I found a safe space to share my story, to offer support for others, and to spread awareness.

For me, this connection was almost as good as a miracle pill.

I am someone who happily shares her psoriasis journey online to raise awareness and to spread some skin positivity. As part of this, I’ve had to accept the inevitable conveyor belt of messages about products, supplements, and quick fixes infiltrating my comments section every day.

Even though I’ve been able to find a platform that positively contributed to my life, the clickbait headlines are always still there. Messages declaring that certain products are “flying off the shelves” or are “the only thing that worked for me” remain, day after day, spreading false hope.

The bottom line

What I’ve come to realize that may actually be the most bitter pill to swallow is this: What works for one may not work for all.

Healing is all relative. Everyone’s experience with psoriasis is different, so everyone’s healing journey is going to be different.

The challenge with managing psoriasis — yes, read that again, managing not curing — is about balance.

Making lifestyle changes, identifying your triggers, and managing your expectations can ultimately lead to helping you manage your psoriasis.

The treatment plan that works for you may involve medications, it may be a more alternative route, or it may be a mixture of both. But believe me, it will not involve any snake oil or so-called “miracle cures.”