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Mistakes Patients Should Avoid When First Taking to the Web

 

When reading this article “Social Media Marketing Mistakes to Avoid” I decided I wanted to write a version for patients in the online health space. I’d love to see what seasoned (and new) Health Activists would add to my list! What mistakes have you seen and how would you correct them?

 

Mistakes Patients Should Avoid When First Taking to the Web:


  • Letting Google get the best of you. When facing a new diagnosis of yours or someone you love, it’s tempting to Google the Dickens out of it until you read absolutely everything you can possibly find. Yes, information is the very first step toward empowerment – but (and this is a significant but) – these searches and health info sites can easily overwhelm you. Before you know it you’re scaring yourself into thinking of the worst. You’re hearing about symptoms, outcomes, and other frightening things all at once. Instead of overwhelming yourself, pause, and consider asking someone you trust to look for you (or alongside you). And, instead of just looking for articles and hard facts – seek out patient communities. The narrative piece and community piece are going to give you solace and honesty along with the facts. Look for patient leaders and community members who can humanize the black and white and fill in where your care team may have left off.

  • Taking to the keyboard before setting up Do’s and Don’t’s for yourself. Decide what you want to share online about your health before you do it. Set boundaries for yourself. Health and health conditions are undeniably emotional and create feelings within us that we have every right to express (it’s actually cathartic that we do). But try not to act too quickly out of passion when you’re behind a computer. Your words and confessions are going to be there for a while (maybe even forever) and you might not be able to censor your thoughts later. Ask yourself – what do I want to share? What do I want to keep to myself? What language am I comfortable using? How many details am I going to share? Keep in mind that these boundaries can change over time (and should) but outlining ahead of time is a good idea.

  • Not talking to their close family/friends about what they are comfortable with being sharing. Too often I’ve seen people online write about other people’s situations and wondered – “is the person they are talking about ok with their personal business being shared?” This is never more important than with health and health conditions. Speak to your loved ones about how you feel and what you are comfortable sharing and not sharing. Remember, especially if your health or treatment could impact them, to learn what they need as your loved ones and caregivers. Talk about what you both need before you jump on Facebook.

  • Post under your real name or identity right away. Like above, it’s important to set yourself up for longevity on the web. It’s better to say a little and add more over time than to try to subtract later. Consider joining in forums and communities by commenting under an avatar or anonymous username. Beware of logging in to sites using Social Sign-on as it sends information to Facebook that may be posted to your Friends faster than you can delete it.

  • Believing snakeoil, spammers, and scams. Especially when first diving into the web and health searches – you’re going to come across a lot of false information, myths portrayed as truths, and products being touted and sold. You’re in a vulnerable place and, as scam artists get craftier with their web-use, you may fall into their trap. Be ready to do your research before you sign up to try anything. And always ask your doctor before changing a treatment or medication routine. Wondering about whether a site is credible? Ask around! Health Activists know the community and are adept at spotting fakes.

  • Self-diagnosing. This is a tough one especially if you like researching and learning about yourself. Remember to take what you read online with a grain of salt and not to do anything drastic until you consult your physician. There are some great symptom lists and quizzes on the web – but they aren’t the be-all-end-all. Keep your wits about you and ask before you try (or buy).

  • Being a bystander, when you could jump in and share. It’s great to start out as a lurker, see what’s happening, and learning how the community functions. But don’t be so shy that you are afraid to jump in. Love a blog post? Tell the author. Learn something about another condition? Say so. Share what you learned. Try new things and see how social media and online community could work for you. Connect with Health Activists who you admire and look for support from fellow commenters and members.

 

That’s my list. What would you add?

 

  • I would add that it’s important to avoid putting much stock in your number of readers, followers, etc. It takes time to build relationships.

  • I’d also add: the internet isn’t a substitute for a good relationship with your doctor. Anything you read that bothers you, or gives you hope even, is best discussed with the doctor who actually knows what your body is doing.

  • Anonymous

    I think that it is time to stop discrediting online sources in your second to last point on your list – Self-diagnosing, you said to take Internet material for a grain of salt.I think that no longer 100% true. Physicians consult the Internet themselves (a good piece for your next article) and with larger online organizations like WebMD, they have a lot of credibility at stake and also don’t they provide advice by physicians on that and other high-power health sites?Taking Internet information for a grain of salt can be just as costly as mistaking bunk information for prognosis.Just thought I would add this view.LTRBP

  • I will strongly second your point about censorship.  Especially since the tougher parts of advocacy can take us into messy situations (or our health can force us into messy situations that force us into advocacy or self advocacy).  The tougher the battle, the more apt we are to let emotions overshadow judgement.  I’d like to say, “you have a right to say whatever you want!” but my experiences of the last few months REQUIRE me to share the following point:
     
    When you are in a real battle with a real and specific “they”, there is a darn good chance that “they” are watching.  Unfortunately, the bigger the entity and the higher the stakes, the more likely it is that “they” actually are. 
     
    I thought it was paranoid of me to think my emotions would warrant federal attention, but I was very wrong.  Apparently I am very important! 

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