When Searching for Medical Information Becomes An Unhealthy Obsession

When Searching for Medical Information Becomes An Unhealthy Obsession

I wonder whether any of us actually went to a doctor and asked if they had leukaemia, after some on-line research of what could be causing some troubling symptoms?

Having a diagnosis of CLL, which can profoundly impact our health in so many different ways, is definitely not a "healthy" starting point from which to avoid this unhealthy obsession, particularly when researchers estimate that there's a prevalence of between 5 and 12% of people that exhibit health anxiety.

"Though most people get nervous about their health from time to time, chronic health anxiety can be debilitating, interfering with work and relationships, and causing sufferers to spend excessive amounts time worrying about medical conditions. Severity can range from occasional worry to chronic preoccupation that meets the diagnostic criteria for hyperchondriasis...

Easy access to online medical information has made it even more challenging for sufferers to manage their fear of illness, and may have created a pathway to the development of the disorder":


Given the "findings by graduate student Aaron M. Norr, MS, and his colleagues at Florida State University suggest intolerance of uncertainty (IU) and anxiety sensitivity (AS) may be risk factors for the development of cyberchondria, perhaps the challenges of living with uncertainty that CLL brings daily, may provide us with some immunity? Even if it doesn't there is hope for anyone that finds themselves burdened with concern about what may be causing troubling symptoms; "Several studies have found that cognitive-behavioral therapy (CBT) is effective in treating health anxiety, and the internet can be the very tool to deliver it."

Reading articles like this always brings to mind a couple of my favourite Mark Twain quotes:

"Be careful about reading health books. You may die of a misprint."


The only way to keep your health is to eat what you don't want, drink what you don't like, and do what you'd rather not."


Photo: Correa (native fuschia) in bloom that I found in a scrub patch. Thanks to Jay for identifying the plant.

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15 Replies

  • Mine was picked up during routine blood for knee op! Not to worry says they you've had it since 2006. Only recently become a problem, so would have been better not to know really. Years of worry for nothing. Keep it coming Neil, a pleasure hearing from someone in the same club!

  • I had 'lumps' in my neck that took me to the doctor, and she did a blood test. I wasn't concerned till she rang me at home and told me not to worry(!) but that I was being referred to the haematologist. Even then I didn't realise she thought I might have had something more critical than chronic. As I've said before the Haematologist was so good that I came out thinking I had something that would never need treatment.

  • I've edited your reply as you intended. Edit is 'hidden' - you can edit any of your posts/replies by clicking on the 'v' to the right of the 'Recommend' button. Give it a try now and when you've replied, I'll delete your 'Oops' reply and my reply. You should also be able to delete your posts/replies via the same 'v' button.

  • Many thanks - I didn't notice that. I've deleted (I think) the second post, with relief.

    Apart from your help with our 'condition', you are also doing a good job of teaching me about computers!.

    You are much appreciated on both counts.


  • Well done, you've now mastered the art of editing and deleting on this site. :) I'll leave these replies here as you are far from alone in not being aware of how to edit/delete.

    I do have the advantage of having worked in IT for many years, which, while not as good as working in the health field when it comes to understanding CLL, has at least given me the skills to easily access health education on-line. ;)


  • Must admit I had a chuckle reading this. In my case it's been my research that's uncovered serious illnesses over the past 3 years. Left to my GP I'm sure he'd still be telling me I had lymphocytosis!

    But I agree it doesn't pay to become morbidly introspective.


  • I knew I had anxiety disorder before I was ever diagnosed! I've had it since childhood.

    It's been my internet research that led me to places like clltopics.org, where I found out I should ask about an IgHV test - which clarified the borderline ZAP70, and relieved a good deal of anxiety. Then I found the CLLSA group here at HealthUnlocked.

    I would have to say that chronic illness in general carries a large anxiety load for many people. I'll bet that many people who are obsessed also have actual chronic disease that just does not fit the standard medical definitions. So the real problem is that such diseases have no easy answers, and it leads people into dark corners in search of relief.

    Diseases like CLL and autoimmune diseases also lead to hyPERchondriasis (not a dictionary word, yet) - one actually DOES get more illness, and one can never quite separate the latest symptom from "normal" aging.

    To me, the difference between unhealthy obsession and healthy is whether you can "walk away from it" for a few days or not. Is your search leading you to more and more dark and dire clues, or are you finding actual answers that you can discuss with a decent doctor? All too often, finding a decent doctor is another problem, isn't it?

    So CLLSA helps us with all of this, I hope. Some sanity checking, reality checking, reassurance, and a warning here or there. Sometimes, we also have to say "we just don't know" and move on ...

  • After reading this I realized I have another medical condition. Cyberchondria! 😷😱


  • O no, not the dreaded Cyberchondria... Poor you, Jeff... Better check for cures online :-)

  • I must confess that I get fairly obsessive in pursuing CLL related information. Prior to diagnosis I scoffed at going to doctors for most any reason. CLL and related health issue pursuits were not solely driven by existential threats for I quite accept the reality that I am going to die sometime and that time has a shortened probability component to it with each passing year, being that I am in my 70s now. The positive side of learning about CLL is the fascinating study of how our bodies work. My capacity to absorb some understanding of cell biology after having drawn the CLL card is part of the fabric of my life. We tend to fear in greater proportion what we don't know than what we know. In a learning context, I can rise above much of the anxiety of the experience if that makes sense? The part of my journey that has produced a climate of anxiety was when I suffered kidney failure that resulted in permanent damage. The thoughts of being disabled or not being eligible for some drugs was very uncomfortable and still leaves a shadow on the future. The bottomline for me is the payoff from being engaged and proactive with my medical issues. I am happy to be here to respond to your insightful post. That is reason enough to validate the balance of being engaged with the intent to maximize outcomes while lessening obsessive worry of the unknown.

    Good job Neil.


  • It would be a bit hard for me to deny being equally obsessive Wayne :) . While it might require a degree of tolerance from family, friends and acquaintances, at least I can gain some reassurance that what I've learnt may be helping others that are trying to better their life while living with CLL.

    I had an abrupt transition from very good health to struggling daily through fatigue and frequent illnesses and I found self education helped me get (much of) my life back. I still find it hard to relax some of the more defensive approaches I undertook to rebuild my health because I definitely do not want to revisit those dark days.

    As you've found, it can be mind boggling, yet intellectually satisfying when you start exploring the whys of how CLL develops and how it impacts on your body's immune system. People with good health take so much for granted, remaining blissfully ignorant of the highly orchestrated immune system processes that generally do an incredibly excellent job at keeping our bodies working extremely well while being attacked constantly by bacteria, fungi, viruses along with other allergens that can adversely impact our health. It's also an eye opener to realise how much humanity has achieved in improving our health in the face of such complex cellular processes - and humbling when you realise how little even the experts understand. The more we know, the more we appreciate that there is so much more we don't know.


  • Being a retired teacher/librarian, when I was diagnosed after a biopsy on a lump which I thought was breast cancer, I immediately started gathering information on CLL. My searching brought me to CLLtopics, Brian Koffman, PatientPower and ultimately here! Thank goodness for persistence which led me to know that so much is happening to advance the treatment of a CLL. When my local hemo/onc decided it was time for a CLL expert and he referred me to Dr. Coutre... I knew I was in luck since his name was featured in my searches..

    Like I told my students, we have to be diligent about making the call between accurate and inaccurate information both in print and in the digital environment ... I am abit obsessed but information is power!

  • It certainly helps when you've had the training and experience in being able to search out and then assess the accuracy of information. There is so much misleading and even dangerously inaccurate information available on-line. Your career skills have certainly served you well by enabling you to identify excellent on-line resources. Hopefully your students will appreciate your imparted wisdom. One thing that the on-line world most definitely lacks is the guiding hand of a librarian :) .


  • WWW sums up beautifully my views on the subject and I subscribe fully to his assertion that, 'we tend to fear in greater proportion what we don't know than what we know.'

    I have a tremendous need to understand my enemy and am bemused at medics who seem to imagine that a body of knowledge cannot be absorbed and understood by others. Nothing compels us to delve and understand more than a personal investment. It's not for everyone but whilst I may die of CLL, I'm determined not to die of ignorance.

    Unfortunately people seem to die a thousand deaths (in their imagination) from hypochondria!


  • That's pronounced "cyber-chondria". Lol.

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