Speak Clearly: Perspectives on psoriasis

We all know the feeling—the feeling that you’re going down a deep hole while trying to find something on the internet. Those who live with serious skin conditions know it well, spending hours on phony websites and researching suspicious products that promise a quick, miraculous “cure.” When I was diagnosed with a serious skin condition, I was no different. In the early stages of my chronic skin condition, I felt lonely, spending most of my time searching for help and information online. I tried out a variety of things, spent a lot of money on alternative medicine and bought alleged miracle cures and ointments. There wasn’t one source where I could easily access reliable information.

Conversations with other people living with chronic skin conditions gave me an idea: start my own online platform to help people just like me find credible information on living with skin diseases. I brought this idea to life a few years ago and along the way, I’ve learned a few lessons about finding trustworthy information on the internet:

If it says “cure” – keep going

The internet is full of false hope, quickly taking our money but not providing you with credible solutions. Many ingredients people online claim to be “miracle workers” are, well… questionable. I’ve heard of apple, algae, red wine extracts, chitin from insect shells, mussel shell powder, or various vitamin and mineral mixtures all being sold as a “cure.” However, these all lack long-term research and proof of results or safety. These are just some of the scams people with skin diseases are subject to. But with all the uncertainty skin diseases bring, especially when you’re experiencing a flare, you cling to any inkling of hope which makes you an easy target for scams and fraud.

If you are experiencing a flare-up, you should turn to your dermatologist before turning to the internet. Not sure where to start? This personalized discussion guide can help.  

Other red flags

If you are researching for more support, seeing any of the following red flags on a website should make you pause and carry out some more research:

  • Vague ingredient information
  • No company information on website
  • So-called “experts” are quoted, but you can’t find anything about them online
  • Questionable before/after photos
  • Forums full of suspiciously similar success stories from “patients”
  • The seller claims they were healed by their own new “ingenious” product
  • Deliberately over-technical language (con artists use it to convey expertise)

Dr. World Wide Web can’t replace your physician

My main piece of advice is the internet should not be supplemental to visiting your physician, who is an expert and can help you. Especially in the midst of a pandemic, many of us look to the internet for information on our disease rather than going to the doctor. Only your doctor can accurately diagnose the symptoms that are bothering you – do not delay in seeking help for your condition from a trusted physician. And once you’re there, be sure to define specific management goals with them and let them know when they aren’t being met. Don’t know how to talk to your doctor? This customizable doctor discussion guide can help you start that conversation.

But it’s not all bad

While it’s important to be cautious, there is plenty of good that comes from the internet too. Feeling informed and empowered about your disease is a great way to play an active role in your management journey. It's also a great place to connect with other people, hear their stories, and inspire each other. See here to connect with others who live with serious skin diseases and took action.

Get clear with your doctor

You deserve to feel confident in your skin, but how do you have a clear conversation about your psoriasis goals with your doctor? Sometimes speaking up can be the hardest part.

Get the tips

Your voice makes a difference

Be clear about your goals. The power to speak up, feel confident and demand the best care is within you. Sharing your story could be your next step to feeling free from psoriasis—and possibly inspire others to do the same.

Submit your story

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