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This guest post was written by Christie Cox who is always bendy and sometimes witty. It wasn’t until she was properly diagnosed with Ehlers Danlos Syndrome at 48 years old that she understood her quirkiness. Following decades of unrecognizable and untreatable health issues, since learning of her condition she has gone from being disbelieved to determined. Ms. Cox now devotes her focus, energy, and passion to supporting others facing a similar fate. She lives outside Washington DC with her husband, John, and their dog, Rodeo. When she isn’t busy researching solutions to chronic health concerns for herself and her clients, she loves being in nature and enjoys the outdoors. To learn more about Christie, or to access her free patient resources and to engage with her inspiring patient health advocacy, visit her business website at http://www.journey2joyous.com.
If you’re reading this, you likely face a chronic illness, disability, or suffer from pain. Too often we get a new diagnosis or symptom and start Googling the words to learn more about the affliction. Many diagnoses can carry a heavy burden to simply absorb the language that you have been labeled with. While it’s important to learn more about a loved one’s (or your own new diagnosis), I must caution you. By just surfing the Internet or you can end up down a rabbit hole until your prognosis is ultimately any number of awful things or even a prognosis of a miserable life or death. You know, you’ve done it before! Let’s learn a better way.
This article will outline how to get knowledge and the power that comes with it, and NOT to get freaked out! You can become an educated healthcare consumer in many ways. It is important to first learn how to find credible medical information and I have a few resources and tips on where you can start, and it’s not by calling Dr. Google.
Top 5 Practical Tips to Consider When Searching For Medical Guidance
Today, we have an explosive amount of information at our fingertips. But we must be careful with the power of the Internet to use it wisely for our health as we advocate and seek answers for ourselves. Here are a few tips from my interview with Trisha Torrey, author of You Bet Your Life: The Ten Mistakes Every Patient Makes:
- Follow the money – In the provider scenario, ask yourself “who is paying who” to best judge who can help you best.
- Find a second or third confirmation of a new diagnosis – There is often unconfirmed information on alternative or other therapies. Do your due diligence before trying anything new and read your medical records carefully to ensure you are not misdiagnosed.
- The HON Code – HON developed a set of legal, ethical, and practical criteria for websites. Make sure any website you use has a HON badge and verify it before following their advice.
- Peer-reviewed – Medical scientists share information in two primary ways – presenting findings at conferences and publishing in medical journals. These journals are typically peer-reviewed, meaning other specialists must attest it is evidence-based. Be very skeptical of therapies that are not peer-reviewed.
- Discuss any and all standards of care with your doctors.
When You’re Not Well or Overwhelmed, Outsource To Get Help
Many patients find support by hiring a patient advocate to help research, plan, and/or coordinate providers, care and appointments. To locate one near you or with expertise in a particular area- like lowering medical bills, finding resources for your condition, and more- check out the Alliance of Professional Health Advocates (APHA) and their independent advocate directory at https://advoconnection.com/. The key to this type of advocate is they are working on behalf of the patient, not the hospital or the health insurance company. Remember, follow the money and who is paying the bill.
When All Else Fails, Google It But Follow These Guidelines: You can find credible medical research and information on a lot of websites you can trust. Here are a few secrets to it below. Keep in mind, the in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
National Institutes of Health website: This is a good place to start for reliable health information.
American Medical Association: It is the largest association of DOs, MDs, and medical students in the US. Their mission is to promote medicine, science, and the betterment of public health. It is also behind the Journal of the American Medical Association.
CDC.gov: This is a great website for a wide range of health conditions but it’s particularly excellent for information, stats/epidemiology, and health epidemics that pop up in the news.
Heart.org: Cardiovascular disease is the leading cause of death in the US. For all of your heart health questions, this is a great place to start.
Healthline: The site aims to find content that is empowering and empathetic and then present it in a manner that ordinary users can
understand.
HealthyChildren.org: This site provides accurate, easy-to-understand
information about health conditions that affect kids. It also gives health tips and suggestions to parents.
FamilyDoctor.org: This site is excellent for covering basic health conditions that you see your family doc for.
Mayo Clinic: Its data is always updated and contains all the latest treatment options for patients. Additionally, if you wish, you can get a list of reliable references, which are found in each article so users are assured that it is based on scientific facts.
MedlinePlus: Designed by the National Library of Medicine to help you
research your health questions.
Medscape Reference: This site provides information on this topic (you may need to register to view the medical textbook, but registration is free).
PubMed: A searchable database of medical literature and lists of journal articles.
Sometimes, You Just Need Someone Who Understands – If you’ve bounced from doctor to doctor with a difficult-to-diagnose condition or live in a rural area, there are many reasons why you might seek out expert medical advice from a larger community of like-minded people. While patients have long turned to social media to seek answers to their medical questions, there are now more reputable sources than Facebook. Seeking feedback from other patients or getting a second opinion is as easy as going online. While many non-profits offer hope and information, a few tools are very helpful in bringing the wisdom of many to your fingertips. Medical crowdsourcing sites and apps are gaining momentum and are powered by AI, including patient-focused sites like CrowdMed, StuffThatWorks, and PatientsLikeMe. They share the same mission of empowering patients, reducing misdiagnosis, and improving medicine by gathering the greater power of patients’ experiences.
I was so frustrated by my own experience as a patient searching for answers, I spent well over a year collecting input and wisdom from other patients, scientists, medical expert providers, and non-profit leaders and shared it in a book focused on dealing with the chronic illness I have hypermobile Ehlers Danlos syndrome (EDS). You can learn more at about my suggested coping skills for chronic illness at http://www.holdingitalltogether.com. Of course you don’t have to do that level of research to write a book and thereare plenty of resources available online, so you don’t have to dial up Dr. Google for a house visit. Become a smart patient first and if you must, try Google Scholar a simple way to search for scholarly medical literature because your health will thank you for it.
Thank you Christie for writing for writing this post, and if you liked it be sure to check out her book!
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