The Social Media of Chronic Illness

Many of my clients have said they either currently use or have used an online support community for their condition.  And there is certainly no shortage of chronic illness support groups, message boards, or  (ahem) blogs.  A quick Google search brings back 2.2 million hits for blogs alone, each one documenting the personal experiences and opinions of its owner.  For a little levity, there is even a Facebook page dedicated to a "Chronic Illness Cat" meme.

So how does one sift through this mountain of information and determine which sites are helpful and which may be not so helpful?  Here are 5 questions to ask yourself when using social media as a support mechanism:

1. Who is the source of this information?  There is a common saying about opinions and everyone having one.  Even within the medical community, there are debates about what is the best course of action in managing a particular illness.  This is a good thing as it advances the science and leads to new discoveries.  If we all agreed, nobody would see the need to change anything.  With that being said, the internet is rife with misinformation - sometimes with malicious intent to exploit those who are vulnerable, sometimes by well-meaning people who are simply not informed.  When taking in information, do your homework on its legitimacy via reputable websites such as webmd, the mayo clinic, the NIH, or emedicine.  If it sounds too good to be true (e.g. simply eating strawberries every day will cure your ulcerative colitis), it probably is.


2. How much time am I spending on here?  Did you just look at the clock, it's 2:30 in the morning and you forgot to eat dinner because you've been logged in since you walked in the door after work?  It's not uncommon to spend a lot of time on a site when you find a group of people who you can relate to and feel safe sharing your experiences.  You may not have talked to anyone else outside of your computer screen about your condition, or at least in any real detail.  So it feels good to get it out, to feel understood and not alone.  That being said, pay attention to how much time you are spending online as your source of support.  If it is interfering with your life so that you're not getting things done or are withdrawing socially, it may be time to cut back.  Allow yourself an hour or two each day and stick to this.  Set a timer that will go off, and when it does log off, get up and find another enjoyable activity to engage in.


3. How do I feel after I've logged off?  The internet is a unique place where you're surrounded by strangers yet you're sharing private details about your health.  On top of that, traditional communication cues, such as tone of voice or body language, simply don't exist.  Take a quick minute to screen your body and mind after you've been online to see how you feel, making note of any negative feelings you may be having.  If you find more often than not that you're feeling tense, angry, or frightened after visiting a community you may want to consider another source of support.


4. What are the people in the group like?  Research has shown that while online support groups are valuable in helping people cope with their illness, we have also found that people who are more distressed tend to spend more time using online support.  Is there a balance of experiences in the group of people who may be managing their condition rather well or are even in remission versus those who are really ill or struggling emotionally to cope?  And where do you fall on this continuum?  It is always good to have a range of experiences to learn from to keep everything in perspective.


5. Is Dr. Google trumping my regular doctor?  Physicians today have had to adjust to working with well-informed patients who often come to their visits with the latest research or recommendations about a particular treatment.  This has led to an evolution in the doctor-patient relationship that I think is quite important and a positive step in fostering a collaboration rather than the more traditional expert-subordinate roles of medicine's past.  However, when the opinions of those on the internet begins to trump that of your doctor and you find yourself modifying your disease management without first discussing it with your physician, it's time to reassess the role the group is playing in how you think about your condition.