Every time I turn around there seems to be a complaint from medical professionals about their patients diagnosing themselves, especially with multiple sclerosis (MS). Google is the main culprit because these searches provide a massive amount of information.

When healthcare providers are asked about this, they mostly express displeasure. Patients who look up medical information for themselves are treated as meddling and uninformed. The idea seems to be that non-medical individuals have no business looking into their own health issues. 

There is no denying that wrong information in the hands of the right person can still be dangerous. As we have seen with COVID-19, people are prone to trying sometimes odd, and potentially deadly, recommendations from questionable websites.

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WebMD, for example, is known for scraping the internet for information without fully vetting it or giving proper warning to visitors. The name of the website sounds authoritative, like numerous other sites, but a basic background search shows widespread concerns with the credibility of some of WebMD’s content.

Nonetheless, there is no denying that many self-helpers regularly use information from a vast range of medical websites. Of course, news stories about DIY patients mention why some people try to diagnose themselves and should not. However, the explanations are reduced to the simplest idea that patients want to show up their medical providers.

For most patients, that is not the point. Patients Google because they need help. They need answers to questions that go unanswered by their health care provider.

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MS patients, in my opinion, tend to be among some of the more voracious internet searchers. MS is a chronic illness that takes a major toll on the mind as well as the body. The nature of this disease means that anything goes. MS patients deal with medical issues from head to toe. Damage to the myelin sheath allows signals to go everywhere. Issues can range from the common, such as foot drop, to the very rare, like trigeminal neuralgia. Optic neuritis affects the eye and spasticity covers arms or legs and everything in between.

Now put yourself in my place. Although I have had MS for a few years, I still am finding oddities related to my illness. Every time I feel some new sensation or pain, I have to wonder if it is MS-related. Is this a new symptom or one which is exacerbating? Is my disease progressing? Perhaps these problems are related to one of the many medications I take. Perhaps it is because of my preferred disease-modifying therapy (DMT). 

For people living with MS and not searching Google as a way of irritating their healthcare provider or trying to best the neurologist. Searching the internet for answers is out of desperation. It is a mad scramble to make sense of what is happening to us. Physician assistance is not available 24/7. Heck, most are only available for an appointment a few weeks out. And even if we can get an answer through email, phone calls, or a dedicated app, it still may not be enough. 

Google is it all just like any other. It can be used for good or for the not-so-good. Rather than castigate people living with MS for using medical professionals might turn that around. A patient who is using Google for help is an engaged patient. This is someone who is highly interested in their own health. They are willing to take the time and energy to learn more. The problem isn’t the patient. The problem is the resources available and how to use them properly.

Medical professionals can help their patients by working with them and not being dismissive. One of the best ways to help is to provide information that can guide people living with MS. It can be in the form of a list of trusted online resources. Providing curious patients with information that you trust may be the best solution. Talking to your patients about their internet searches can provide meaningful information. You can learn about their greatest fears and about symptoms that may need to be better addressed. 

I am notorious for my Internet searches. If there is something going on with my body, I am going to see what I can learn. I have learned how to discern poor information or outright lies from dependable, solid research. Since I have had access to the internet since 1991, I have learned how to use it satisfactorily. I have also been fortunate to have an MS and general care team supporting me. They do not try to dissuade me from searching. They do not summarily dismiss my research, nor do they insist I am too ignorant to understand what I am reading.  

MS patients are not going to stop researching for themselves. The goal should be to assist them in finding useful and accurate resources. Simply telling them to quit “playing doctor” is paternalistic and insulting. These are people looking for answers and often hope. Becoming a good partner to these inquisitive patients can turn Google from an enemy to a useful friend.

They just need compassionate and understanding healthcare providers who will point them in the right direction.