From Linda M. Rio, MA, Marriage and Family Therapist – I was recently asked by a pituitary patient to make some comments and continue the discussion that was started here in a podcast featuring privacy and security expert, Jay Libove “Can Oversharing Information Be the Best Medicine” . Both Jorge Faccinetti, PWN co-founder, and I agree as well that this topic is worthy of merit for further exploration. PWN has addressed some additional aspects of this very broad and far-reaching topic in prior articles and podcasts by Dr. Blevins, Jorge, and myself. Since the effects of technology, social media, telehealth and more are fluid are ever-changing we encourage readers to provide ongoing comments and feedback as well.
There are many, many social media and patient “support groups” that offer “support” based upon the “misery loves company” belief. I have previously written for PWN, “Having any medical illness is difficult. Having a medical illness that no one seems to understand is uniquely isolating.” (Rio, February 2019). And almost everyone has at one time or another been physical and/or emotionally ill and really wanted someone, a doctor, family member, friend to just sincerely acknowledge the pain. The key to this is “sincerely”, and like it or not we do not often get that unless we talk with another person who actually has experienced the same or similar experience. So, given this need what then is or can be the therapeutic function of social media?
Medical and mental health professionals must be extremely concerned with patient privacy and HIPPA regulations. The media often reports on privacy breaches of confidential information that sometimes have affected thousands. Privacy, privacy, privacy is in the news almost daily whether about such breaches, or practices of Facebook, Google and other social media giants. While many will promote the dangers of the internet world, others will then share extremely detailed information about themselves and their medical condition online. So, what is the difference? Many so-called “private” or “closed” online groups allow intimate sharing but most tech-savvy users know that there is nothing truly private if it is on the internet.
Another related issue brought up by patients as well as professionals is the impact of consulting ‘Dr. Google” for “medical advice”. Patients often read endlessly online about their symptoms to the point of panic only to be told once this is brought up with the doctor that the information found does not apply to them. Unnecessary stress and worry, but patients often need, want to have some sense of control so reach out wherever they can find it. In today’s world, a screen click is all too close. Of course, a comprehensive, highly educated assessment is not possibly found through even the best Google search or from other patients in an online chat group.
I have shared before my lifelong history with chronic migraine headaches. Most months of my life I have 8-20 or more days with some symptoms associated with migraine. I see some peripheral similarities to pituitary disorders (I stress “peripheral” because I clearly know there are very important differences!). Until relatively recently migraine was considered a female affliction, not fatal, therefore relegated to the very low end on the spectrum of importance in medicine. Very little research was conducted and patients were often undiagnosed, presumed to be pain medication addicts seeking meds, or told we were hysterically making a bigger deal than necessary. So, have I sought information online? Yes. Have I brought information about clinical trials to my pain specialist? Of course. Do I subscribe to Facebook and websites that provide treatment and clinical research updates? Definitely. Also, because of some of the above, I get advertisements, often carefully veiled as medical news, sent to me. I have had to learn to be watchful of the source of all information and to be as discerning a consumer as I can be.
Dr. Elizabeth Leroux is a neurologist with a headache specialty, associate professor of neurology at the University of Calgary, president of the Canadian Headache Society, director of the Headache Clinic at Notre Dame Hospital affiliated with the University of Montréal. Dr. Leroux is also a member of the American Headache Society and serves on the scientific advisory board for the American Registry for Migraine Research. In responding to questions about ways for migraine patients to be good consumers of information posed by the online site, Migraine World Summit, she is quoted as saying:
“As a human society, we have evolved so much that people are not ready to believe anything now. Pseudoscience usually relies on exaggerated claims of success, and people who promote pseudoscience are not very prone to accept criticism, or to refute their theories, or to really make good studies to prove themselves wrong. What they will do, though, is to try to prove everything they say as right with a lot of very questionable methodologies. So, it’s sometimes difficult to separate pseudoscience first from science and sometimes theory that was pseudoscientific will be studied in a correct way and will be proven true. There’s also this little gray zone, but there’s a rule of thumb: If anyone tells you 95 percent cure for migraine, it’s very suspicious. It’s the same category as ‘eat what you want and you’re going to lose 10 pounds’ or ‘stay in your living room and make a million dollars,’ right? We all want to believe it. So, if you see that kind of claim, be very, very suspicious, and remember that sometimes beautiful theories — if they are not proven by strong methods — they don’t mean much…. I think we should really remind ourselves that absence of proof is not proof of absence. We have to be very careful about quackery and claims, but we should not discard options because they are difficult to study. I think we should just look at them with scientific glasses and say, ‘Well, are there risks? Is there a harm possible?’ Because sometimes something that’s alternative can actually be linked to some harm.”
Speaking from the perspective of a mental health professional I can say there are differences even in “live” support groups and caution my clients to choose carefully and wisely as well as to evaluate the benefits on an ongoing basis. I will say the same for any group or chat online. First of all, TRUST is extremely important and does not occur naturally nor should it be given immediately. This is true whether deciding to trust in an online chat or support group, a doctor or therapist, friend, or intimate partner. Trust takes time and must be earned! And, trust must be constantly be re-earned over and over. Over-trusting, especially strangers online and with very intimate medical details can result in terrible consequences. There is also a difference between any group, live/in person or online, that is led by a professional mental health professional vs an open sharing and free-flowing group. In my opinion, the more vulnerable, and especially in-crisis a person may be, the more important it is to only join a group that is led by a professional, or at least a patient advocate with many years of experience and who may be closely associated with a reputable doctor or medical center. It is also important to know that no one should tell another person/patient what they need to do. Guidance, resources, helpful hints gained from experience can be shared and listened to but in the end, each person must feel very free to choose their own path for medical and mental health care. I would always steer clear of any person or site that tries to strongly direct you to a specific type of treatment, product, medical procedure, or treating professional. And, the reading of medical test results, scans, etc. should ONLY be done by the physician who is treating you, or giving a second or third professional opinion.
The old adage is really true…if it sounds too good to be true…! As in all aspects of life, especially in today’s ever more complex world, caution is advised in seeking and receiving advice and medical/psychological guidance. Given that however, each person needs to mindfully know their own requirements for support and help as long as they are aware of the risks and consequences. Trust is something that is precious; to be given carefully and consciously.
References:
Blevins, L. (2019). Telemedicine: Options, issues, and the future. (Retrieved July 24, 2019) “Telemedicine: Opinions, issues, and the future. Pituitary World News.
Faccinetti, J. (2019). The susceptibility of social media groups to believe and advocate for false, erroneous, and sometimes dangerous information. Misinformation and bias: The susceptibility of social media groups to believe erroneous and sometimes dangerous information (retrieved July 24, 2019). Pituitary World News.
Migraine World Summit (2019). Dodging false promises and treatment claims. (Retrieved July 24, 2019). https://mail.google.com/mail/u/0/#inbox/FMfcgxwChmWCbhsXjkfsBZHGFXfDpQkB
Rio, L. (2019).Misinformation and bias. Misinformation and bias: additional perspectives (retrieved April 3, 2019) Pituitary World News.
Rio, L. (2019). The importance of being believed.. (retrieved February, 2019). Pituitary World News.
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