3 Keys to Corral New Information During a Life Transition

Back when dinosaurs roamed the earth, the only way to get information about health conditions was books, magazines, newspapers, and maybe the encyclopedia. If you were lucky enough to get facts in real time, it was most likely a support group associated with a hospital.

My, how times have changed!

Now, if you want information on a medical condition you can find hundreds, if not thousands, of resources on the internet. The problem: the speed at which data is available is greater than the amount of time to review it.
As a result, you will never be able to learn everything about your diagnosis! I hate to burst your bubble.

So, it’s critical to establish a strategy to get relevant, accurate information without negatively impacting your ability to “manage life.”

Here are three keys to gathering pertinent details while maintaining your sanity:

LOCATION.
This is the first key for a reason: if you don’t have a method for how you’re going to store the new information, you won’t be able to access it when you need it. Then you’ll either waste time looking for files you previously saved or you’ll take extra time reconstructing the same material. Either way, you’ve used precious time that you don’t really have.

Note: planning to store all pertinent information in your brain is not an option!

Before you decide on a location, consider your preferences.

Are you a pen-to-paper person? I like physical books or articles so I can highlight and write in the margins. While I know this functionality is available on some digital devices, I still like to use physical writing utensils. Do you prefer reading on a screen? Maybe you like to listen to guidance when it’s available. It’s possible that your preference varies depending on the type of information. There isn’t a right or wrong way to retain information (except in your brain). It’s a matter of knowing your preferences and planning accordingly.

Preferences determine the necessary tools and supplies.

Personal Example.

When researching reconstruction options prior to my mastectomy, I knew I’d want to keep track of details about any options in which I was interested, particulars from my medical team, guidance from people who had previously gone through the procedure, and possibly other data that I didn’t even I know I needed yet. While I prefer to have what I’m reading in my hands, I also realized that printing out every article of interest would use lots of paper and ink, not to mention that I’d need to catalog the articles to review them in the future.

My compromise:

• Bookmark websites using Diigo so I could easily tag them and find them again.
• Clip some articles to Evernote.
• I only printed three articles that I wanted to easily access at a medical office. Reading them in Evernote on my phone didn’t work for me and at the time I didn’t have a tablet.
• I used a 1/2 inch notebook with subject dividers for portability. It had the articles I’d printed, documentation from medical practices, notes I took when talking with women who’d had mastectomies, questions to ask, and anything else related to the procedure.

Would I use the same system for a different surgery in the future? I don’t know. It would depend on the complexity of the procedure and technology changes.

Check out Resources Other Than Your Brain That You Can Use to Retain Information for additional ideas regarding information location.

DIFFERENTIATION.

I know it’s a shock, but not all information on the internet is accurate?

An important part of maximizing your research time is visiting the best and most comprehensive websites. The most efficient way to do this is to look for the educational websites of the national or international syndrome about which you’re seeking information. Here are some examples:

Type	Diagnosis	Possible Resources
Brain-based	Attention Deficit Hyperactivity Disorder (ADHD)	•Attention Deficit Disorder Association •National Alliance on Mental Health: ADHD •National Institute of Mental Health: ADHD
Brain-based	Anxiety Disorder	• Anxiety and Depression Association of America • National Alliance on Mental Health: Anxiety Disorders • National Institute of Mental Health: Anxiety Disorders
Autoimmune	Diabetes	• American Diabetes Association • Cleveland Clinic: Diabetes • Johns Hopkins Medicine: Diabetes
Autoimmune	Celiac	• Beyond Celiac • Celiac Disease Foundation • Mayo Clinic: Celiac disease
Body-based	Bell's Palsy	• Mayo Clinic: Bell's palsy • National Institute of Neurological Disorders and Stroke: Bell's Palsy Fact Sheet • NORD Rare Disease Database: Bell's Palsy
Body-based	Ovarian cancer	• Johns Hopkins Medicine: Ovarian cancer • Mayo Clinic: Ovarian cancer • MD Anderson Center: Ovarian cancer

Your doctor might have written information about the condition or may have book and website recommendations.

PRIORITIZATION.
It is overwhelming and time-consuming to research everything about a disease. It is easier to take it in stages.

Example – Part 1:

1. The doctor suspects that you might have Sjogren’s Syndrome. Testing will take several weeks.
2. You allot one hour to gain a high-level summary about the disorder. On the Sjogren’s Foundation website you discover the main characteristics, how it’s tested, and treatment options.
3. You spend an additional 30 minutes researching the main characteristics of this autoimmune disease: symptoms, presentation, features, severity levels, etc. more in-depth.
4. After the testing and before any appointment regarding treatment, take an hour and discover the different options to manage Sjogren’s Syndrome.

Since it isn’t possible to learn absolutely everything about a possible new diagnosis, getting an overview is followed by researching what you need to know first.

Example – Part 2:

As time goes along in the diagnostic and treatment process, new priorities will arise. You’ll want to know more about which characteristics of Sjogren’s Syndrome impact you the most. Learning additional risk factors that you need to be monitored for will be important. Understanding the options for managing your symptoms will be key to living your best possible life.

Over time you may visit the websites for the American College of Rheumatology or the National Institute of Arthritis and Musculoskeletal and Skin Diseases for additional information about your condition.

At some point, you may discover that you don’t need to take many notes about your condition. Instead, you may join an online or in-person support group and find that now your attention has shifted to using the best calendar and contact list.

That’s a lot of information about dealing with new data! Just take one small step at a time.

What’s one thing you struggle with when it comes to corralling new information?

Let me know below and I’ll respond with an idea or two.