Although the Internet has brought you to this site it’s not always helpful. You have likely spent endless hours, days, and sleepless nights scouring medical sites searching for answers to your child’s (or yours!) unexplained condition. We are overloaded with information today via all types of media. It’s hard to filter out unimportant information.
It’s exhausting and frustrating searching for answers online. You need the right tools and background to determine what information is important. You also need to know what information is not important. The reason I bold text “not important” is because that is what will help you and your doctors stay on track.
Why do we need to filter OUT?
The nocebo effect. The nocebo effect is the opposite of what you have heard of before – the placebo effect. The placebo effect is a healing effect. And it’s true. But the nocebo effect is the opposite. It’s when you read about illnesses and start to believe that is what is wrong with you, or your loved one. You can actually manifest symptoms you are believing to be true. There are reports of people who believed they were dying who then died shortly after. After the autopsy, they found, there was no cause for what happened to them. This is something to keep in mind while you are in pursuit of an answer. You want a real answer; a legitimate answer. You don’t want a misdiagnosis by a doctor, but you do not want a nocebo self-diagnosis.
What is useful information then?
There are useful information, studies and forums, support, and more on the Internet. On this site, I have compiled information to help. But everyone needs a set of skills to help them understand what is good information and what is not. That’s what I am here for, to help you get those skills.
Skills to Research Effectively
Let me start by taking us back a bit. Remember the days when you could simply leave the phone off the hook? You would avoid all communication with people. They would literally have to come to your house to speak with you if your phone was off the hook. And that was it, folks. That was it. If you wanted information, you went to your librarian who helped you search for a book to find the answer.
Let’s take a break from the endless stream of information (a.k.a. The Internet), and get back to basics. Believe it or not, back to basics will help you start to search with purpose.
Step 1: START OVER
The first step you need to take is to disregard any research you have done so far. I know, I know. It has been a lot of your time. Let’s just put it away – in a different notebook. We may revisit it or we may not. Let’s start like we never even looked for any information yet. Clear your mind. It’s always going to be there in the back, which is fine. But let’s get it out of the forefront.
Step 2: Symptom Charts and Journals
The most important part of getting a diagnosis is symptom tracking and journaling. If you truly want physicians to see what you see, you have to show them in a tracking system that makes sense. Not only do you need it for diagnosis, but if you want to research on your own it’s necessary.
I have written a book that walks you through tracking illnesses in a way that helps physicians see what you see. How To Get a Diagnosis has an in-depth journal tracking component that is necessary to effective research. Using these tools will help you produce USEFUL search information for your condition. It’s better than wasting your time online!
At this point, if you haven’t created any with the pieces in my book, get out the materials you might have created on your own. Haven’t created anything? Time to start using the pieces of the book and complete them from memory. If you created nothing, check back next week on tracking symptoms effectively to work toward a diagnosis.
For today’s purposes, what you need to research effectively is a history and journal with specific symptoms included. Knowing the body systems, as well as the symptoms that correspond to them is a key component to looking for the correct information. It will help you filter out useless information. You will also need blood work and other testing results. All are part of the tracking system.
Note: If you like what you are reading and want a tracking method already put together for you – check out How to Get A Diagnosis. It has all the tools you need to track symptoms in an effective, organized manner.
Step 3: Start to Search for a Pattern in Your Notebook (Tracker)
Once you have compiled a tracking notebook you are going to use it to locate patterns. ONLY FROM YOUR NOTEBOOK. Stick to what you have down on paper.
Using your notebook and your test results you will be looking for groupings of patterns in your symptoms from the charting. What column of your spreadsheet is always full of symptoms? Looking at your blood work – what panel is always out of range? Check out my tools to help. For even more helpful tools with a step-by-step guide – check out my Resources page.
Make notes about patterns you are seeing using the FREE tool. (If you want the full version of these tools, check this out). Look at symptomatic and asymptomatic times. Compare and contrast both times. Look for blood work during “healthy times” and blood work during episodic times. Take notes.
What do you do now?
Option 1: Go to Your Doctor with Your Charts
You can take all of this information with you to your next appointment. You can share it with your physician (bring a photocopy of ALL of it with you to the appointment so you can hand the doctor their own copy). You can discuss it with them and ask for a referral to whoever they might think is best. You can ask their opinion on what you compiled. See if they think there are other tests to do or what the next step is.
Option 2: Research Yourself, and Then Go to Your Doctor
If you just can’t help yourself from searching for an answer, it’s understandable. You can do some online research, and include it in a research section of your notebook. Then you can take the notebook with your research included to your next appointment. Or make a new appointment if you feel it’s more urgent now. Be sure to bring a photocopy of your whole notebook to hand to the doctor.
It’s hard to research online alone. My book walks you through a step-by-step process to perform thorough – helpful – online research. I highly recommend following the steps in my book to do your own research. It will keep you focused, keep it simple, and provide more useful information to your doctor.
The following sheets will help you see what you will get in my book. The book walks you through how to complete them and MORE!
Be careful out there. If you feel you are really stretching for answers and starting to get off course – get offline. Stop looking. If you are starting to wonder if you or your child actually had the symptoms you are researching – STOP researching right then. You are only looking for patterns and solid symptoms that have been documented. NOTHING MORE. The unimportant information provides a differential diagnosis (i.e. it rules out other things). So stick to the facts folks.
Good luck, and check back next week on tracking symptoms.