Whenever I need to know anything nowadays, I mostly just look on the internet and sometimes I ask my virtual PA ‘Alexa’ to look for me! However, you need to be very careful in acceptance of what is credible information and what isn’t.
As a relatively experienced health blogger and activist, I like to think of myself as ‘internet savvy’, so I occasionally find myself using ‘Dr Google’ to diagnose my own aches, pains and unusual feelings (and I confess to using it to help others). I mostly find there are no real or definitive answers online for many patient reported issues. Although I seem to learn something on each piece of research, I also find some really worrying stuff. Some symptoms can have dozens of reasons and I often realise how difficult it can often be for a doctor faced with unusual, vague and nonsensical symptoms! However, I also feel symphathy for an online patient looking for answers.
On a recent online symptom check for lower left abdominal spasms, I discovered I was pregnant with an alien baby! (Ronny Allan)
The internet is really powerful but also really dangerous. For example if you look up “best treatment for cancer”, you have an astonishing 300 million offerings. Right there with rigorous, evidence-based sites, there are those offering fermented foods and DIY cancer cure kits (e.g. fake healthcare news and cancer myths). Worried patients sometimes need help to distinguish between sensible advice and fanciful claims/ miracle cures. In a study published in 2019, according to the American Society of Clinical Oncology (ASCO)’s second annual National Cancer Opinion Survey, a surprising 40% of Americans believe cancer can be cured solely through alternative therapies (higher in younger patients). In a similar study in UK, the NHS blamed social media for the spread of fake healthcare news. Unfortunately social media ‘misinformation’ includes ‘alleged’ cures for various ailments including cancer. I think we’ve all been there, we check twitter, Facebook, Pinterest etc and we find the ubiquitous miracle cures for every illness under the sun. Easy to find, easy to read and worryingly, easy to share. Surely these cures must be true, after all…..it’s on the ‘NET’. Read more about the sort of things to look for – click here.
When I combine my own experience with what I read on patient forums, I can see that internet searching is not for the faint of heart. Some people are already in a state of anxiety before they started searching Dr Google’s archives, and what they find has probably made their anxiety worse. In fact, the rise of the internet has created a new term for those who worry themselves sick and continually misdiagnose symptoms on the internet – ‘Cyberchondriac’.
Even when we know ‘googling’ our symptoms won’t end well, we don’t seem to care, we just need answers! Searching authoritative sites is therefore really important and the availability of proper medical information online is actually putting more power in the hands of patients. It’s how we as patients exploit it that is really important. Just as you can find examples of ‘cyberchondria’ online, you can also find examples of patient power in a doctor’s office. Worryingly, you can also find examples of ‘Dr Google’ being right after being dismissed by real doctors, sometimes resulting in patient illness or even death.
The medical community need to accept that searching for more information is a natural patient instinct, not a slight against one’s doctor. The profession will have to get better at educating the next generation of doctors now that Dr Google is here to stay and, I think, to help. That said, I don’t believe the internet will ever replace the profound human dimension of the doctor-patient relationship. And of course not everyone is happy about “Medical Googlers“.
Tips for online searching:
1. Don’t actually use internet search engines if you can help it, go to a reputable site and then search that. For example try RonnyAllan.NET
2. Try to be specific as possible because vague search terms will result in frightening answers, and in practice any symptom can be read as a sign for nearly every single horrible illness, or a worsening or recurrence of an existing condition.
3. Less common conditions are less common, and minor symptoms often resolve themselves in time. If you have more worrying symptoms, or if your symptoms are changing or progressing, then go ‘offline’ i.e. visit your GP or primary care facility. If you’re sure of your facts, be assertive until you’re convinced otherwise. However, accept that the internet may be wrong when you seek medical help.
5. If you’re someone with an already diagnosed serious illness, the worry that goes with that is quite understandable – check out my 8 tips article. However, the same tips apply although you may now have established your own specific sources of advice in addition the general health areas.
6. Charities and associations for specific conditions are also a good information source but just note they may not have the best or up to date simply because they have been granted a ‘charity’ or equivalent status. I’ve seen some complete rubbish on many of those sites. Patient forums can be ‘frighteningly good’ but they can also be ‘good at frightening‘. Personally, I try not to compare myself to strangers on the internet.
OK, the graphic below is slightly ‘tongue in cheek’ but for those who are very anxious, it’s a reality. I can see from my own group that many Neuroendocrine Cancer patients have become very adept at searching online – useful because many still need a lot of help.
Be careful out there it’s dangerous. I have a private group for patients and caregivers where I like to ‘keep it real’. Check it out here.
Thanks for reading.