Don’t "Google." ASK.
This was the message on a poster in the exam room at my recent doctor visit. The poster went on to say that each patient is different and your doctor is your best source of information. Very true, but Google can be a tool to start conversations about better treatments with your doctor.
Technology is good, until it isn’t
For many patients, especially those recently diagnosed with psoriatic arthritis, the internet holds invaluable information. It’s a place full of research, facts, treatment information, and advice about nearly every disease with a name. It’s even a place to go when you don’t have a name for your illness, but you have countless symptoms and you try to play detective (which I don’t recommend).
Here’s the problem: The internet is also a place of widely varying opinions, scams and bullies. It can be a place to provide comfort and connect with other patients who have similar experiences, but it can also be a place to spread fear.
The bad sites
This pill will cure you. Change your diet now. Think positively and all will be ok.
I admit that I’ve been sucked into a handful of scams and poor advice. When you’re at your most vulnerable, you’re willing to try just about anything. Unfortunately, there is no cure, and rarely does one diet make all of your symptoms disappear. And if you could just will your disease into remission, that would have happened for me the first time I couldn’t grip the steering wheel to drive.
My advice: Stay clear of any site or advice that claims to be a cure. If the site you visit doesn’t have information that was peer-reviewed by doctors in the same medical field, go to another site. Remember that your symptoms may end up on a list that is the same as another disease with no good outcome. Don’t automatically assume the worst.
The good sites
Find sites that promote patient-to-patient connections that promote hope and working with your doctor to find a treatment that works for you. The “good” sites will recognize that they are a source to help you, but never a replacement for your health team. A good site will offer advice with the caveat of following up with your doctor. A good site may also provide information on the best way to talk to your doctor and how to go about finding a new doctor if you have lost faith in your current one.
My advice: Visit sites that foster a patient community that wants to help one another, respect one another and has moderators that shut down behavior to the contrary. Health Union is a great community that does just that. Also, seek out non-profit organizations that welcome transparency and have a good Charity Navigator rating in the psoriatic disease community. The National Psoriasis Foundation is a great place to start and offers many free resources to help the newly diagnosed and those who have been around the block with PsA.
Social media sites
Social media has been a blessing to me. When my son was diagnosed 16 years ago with psoriasis, there were very few places to turn for sound advice, and even fewer that featured a way to connect with other patients. Today, the internet is booming with Facebook groups, hashtags like #spoonie and #psoriaticarthritis, blogs and chat boards. It’s a great way to find others living with similar experiences.
My advice: Connecting with others can give you confidence, hope and ideas to make the best of your situation. However, patients are not doctors. How your disease manifests is not how another’s is. Use the information you gather from social media to have a meaningful discussion with your doctor and use this to take an active role in managing your disease. And, most importantly, never allow another patient to put you down or diminish your concerns. Bullying, no matter how slight, is never appropriate. If this happens, take your concerns to the social media group moderators and ask for help, or if there are no moderators, try another social media site where you are respected.
So, is google OK?
The internet – and Google – are ok if you use the tools wisely. Remember your days of high school when you needed to source your facts and make sure opinions were from experts? The same is true for the authors on the internet. If they aren’t experts in their field and they haven't been peer reviewed by other top health professionals, then you should be skeptical of the information you read. If you are promised the cure to PsA, it’s probably not the best source of information and you should probably seek out another site.
My advice: If you believe the information you find to be true, then share it with your doctor. Because, let’s face it: Our limited internet knowledge and research does not compare to years and years of school and training. This isn’t to say that your doctor will always get it right, but if he or she isn’t willing to at least listen to you, then perhaps it’s time to find another who will.
Were you ever misdiagnosed before being diagnosed with psoriatic arthritis (PsA)?