By Katarina Zulak
We live in an era of unprecedented access to information. We also live in a world where chronic illnesses like fibromyalgia are disbelieved and dismissed, even by doctors, causing patients to often become experts on their own medical conditions, researching diagnoses and treatments online.
You will commonly hear people say, “Don’t trust Dr. Google!” Go from appointment to appointment trying to find someone who will diagnose and treat you, a process that takes about five years on average for patients with fibromyalgia, can, however, make you a student of Dr. Google. Credible online health information can help patients fill in knowledge gaps and is a good source for finding out more about diagnosis, potential treatments, and the most recent discoveries about a condition. The key word is credible. There is information, and then there is misinformation, and it can be hard to distinguish between the two. This leaves patients asking, “How do I find accurate information about fibromyalgia online?”
Credible information is trustworthy, meaning that it is backed by facts, expertise, and real-world experience. We can divide credible information into two broad groups: medical knowledge, based on research and clinical outcomes, and lived experience, based on the expertise that patients living with an illness accumulate through experience. Another way of thinking about this division is that there we have knowledge backed by numbers (quantitative) and knowledge based on experience (qualitative).
Health information is credible when it is supported by referenced, reviewed, and reputable sources. Let’s unpack these terms one by one.
- Referenced: when you are reading health information online, it’s vitally important that the author cites research that provides evidence. The easiest way to check for references is to scroll down to the bottom of the article and look for a bibliography, reference section, or works cited list. Beware any articles that describe evidence in vague terms like “many people believe” or “many studies show” without providing references.
- Reviewed: High quality health information will cite studies published by academic journals, which means that it has been verified and peer reviewed. In other words, the research has been scrutinized by other experts to ensure scientific quality. Some health websites will also have their articles reviewed by a doctor, which is usually indicated by the name of the author.
- Reputable: a reputable source is one that has buy-in from the health community, including patients, healthcare professionals, and researchers. For example, a non-profit organization or patient advocacy group, like the National Fibromyalgia & Chronic Pain Association, orr, the ProHealth online fibromyalgia resource center.
Once you’ve done your homework using credible online medical sources, you can take this knowledge to your healthcare professional, and use it to inform your questions, share research with your doctor, or to get a second opinion about your treatment options.
Valuable online health information also includes knowledge shared by other people who live with chronic illnesses. ‘Patient experts’ can provide solutions, advice, ideas, validation, support, and shared experiences with their peers. This information can be found on blogs, health-oriented websites, and social media. The health information provided by patient experts is particularly valuable for self-management strategies to cope with pain and symptoms, making lifestyle changes, or coping with the mental and emotional challenges of living with illness. It may give you ideas about possibilities for your own treatment and care.
However, it also has limitations, because this information is based on one person’s experience and isn’t equivalent to scientific research, which must be tested using multiple participants and reviewed by other experts before it can be published.
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Beware Misinformation: Red Flags to Watch Out For
Misinformation is everywhere these days. The best way to avoid being taken in by misinformation is to be a critical reader. If an article raises any of the red flags listed below, it means that you need to do more research, to see if the claims can be corroborated by high-quality scientific information.
- If it sounds too good to be true, it probably is. Any claim by an author that they know a cure for fibromyalgia, or a secret no one else knows about, should immediately raise a red flag for readers. We know fibromyalgia is not curable, although some individuals may have remission, and that fibromyalgia is unique for each patient. There is no one-size-fits-all cure.
- Having an agenda. Consider whether the author has a bias or agenda. Health information is not as credible when it’s in service of a marketing campaign, especially if it is unresearched or unreferenced. If an author only cites their own work, then their real agenda may be self-promotion.
- “It’s all in your head.” By now, it should be an established scientific fact that fibromyalgia is a physical disorder. Unfortunately, there are still some doctors and researchers who promote the claim that fibromyalgia is all in your head and a “psychosomatic” illness. If an article discredits your experience living with illness, then it doesn’t deserve your attention.
Indicators of a Deep Understanding of Fibromyalgia Health Information
- “This works for some people.” If an author suggests a treatment which has worked for them personally, their patients, or research subjects, but acknowledges that everyone with fibromyalgia has a different experience, then this shows they have an open mind and a deep understanding that, in the real world, fibromyalgia is a very individual illness. With such a poorly understood condition, anyone suggesting treatments should always be open to the possibility that they might not work for everyone.
- “Some research shows… ” or “But we don’t yet know…” They say that the more you learn, the less you know. New research often raises more questions than answers. And it’s not uncommon for two similar studies to show opposite results. New scientific discoveries often force us to throw out older theories. If an author is humble about the limits of how much they know and open to questions or second opinions, then this is a good sign that they have integrity and a scientific mindset.
Katarina Zulak is a health blogger, health writer and all-around health nerd. Nine years ago, Katarina was diagnosed with fibromyalgia and endometriosis. On her health journey, she has learned the power of self-compassion and self-care skills to improve her health and wellbeing. As a writer, she is excited to educate and encourage others to be skillfully well, even if they have a chronic condition.
Katarina lives with her husband and their cat Sarah. She loves learning, being outside, reading, gardening, and catching up with friends over a steaming mug of tea.
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