Being a patient is hard for me, as I’m sure it is for many of you. Beyond battling a disease, we have to battle every hurdle possible with the healthcare system. Every office visit is a battle of stress and endurance. I hate it. I hate the stress. The waiting. Sitting on a piece of paper mostly naked. Feeling invisible when the physician is looking at the computer screen more than they look me in the eye. I hate the whole thing.
But I also know that I have an edge when it comes to being a patient. I have worked in healthcare (specifically the operating room) for my entire career. I know how the system works, and I know how to work the system. I know how to speak to doctors so that they listen, and when they listen, they tend to share more information. Over the years, I have gained plenty of insight into the role that communication plays between those being cared for and those providing care. And I want to share some of these insights with you so you have a leg up in your battles.
5 steps to getting more out of your doctor’s visit
Step 1. Do your homework!
Do you truly understand your illness? What stage are you? What treatment is available? What is your prognosis? What does the word ‘prognosis’ even MEAN?
When you are diagnosed with an illness or a disease, every office visit can be completely overwhelming. The poking and prodding, the scans, the anxiety, all the information jammed into a 15 minute discussion – it can easily be too much to handle. But you can help yourself TREMENDOUSLY by doing your own homework beforehand.
Why does this help? Think of every visit as a college exam. Better yet, think of every visit as a Major League Baseball game (Baseball is a serious weakness of mine. And I have no shame. Go Sox! 🙂 No MLB player goes into a game without studying up on the opposing team. Every player has an amazing amount of talent, but they don’t rely solely on their talent alone. They do their homework. They study the pitcher, the pitches, the team, the coach. They study previous games and know what strike zone the umpires like. They know what they need to focus on for every game BEFORE the game happens.
So study the opposing team. Research everything you possibly can about your illness. Make it your JOB to understand your health and every possible option you have in treatment. No, it’s not fun and your brain is going to hurt with all that information. But wouldn’t you rather do your homework (like the pros) and show up to the game ready to win? I know I would!!
Now, you might ask, “WHERE in the world do I start?” Well, keep reading!
1 – Basic research
First, make a list of the things you need to know. What is my illness? What is the prognosis? (Meaning, how does this diagnosis look long term). What are the treatments for my disease? What happens if I DON’T treat this disease? Any questions you may have, write them down. THEN start your research.
Almost all illnesses have a society or organization that provides information and public support. For cancer, for example, the American Cancer Society has a great site with lots of information. For diabetes, there is the American Diabetes Association. For heart disease, the American Heart Association. The list goes on. Always go to these sites first.
Take notes and if you don’t understand any words or language, look them up. Get familiar with the language these websites use and take notes. For example, high blood pressure and hypertension are the same disease, so begin to use these terms interchangably when talking with friends or family. When you get familiar with the medical terms, they don’t sound as scary. This comes in VERY handy if you are usually overwhelmed in a doctor’s office. If you familiarize yourself with the vocabulary, you can speak their language and have a better experience.
2 – Extend your search
Next, visit the other sites mentioned in the first website that pertain to you and your situation. Take MORE notes. If these websites mention other information sources, check THOSE out. And take more notes. Use the internet like the web it is – all sites lead you to other sites. Just make sure you can trust the websites you visit. Many hospitals and medical centers have their own websites and research into specific diseases which list other sources. And Wikipedia, for example, has gotten much better over the years at listing their sources. Visit those sources and, again, take notes. (Have I mentioned taking notes? You should definitely take notes!)
If you seem bogged down with all this research, then try and make it simple. If you have a diagnosis or a care team already, call them up and ask to speak to your doctor’s nurse or PA. Most of the time, your doctor’s support staff has access to a wealth of information (hand-outs, websites, and articles) that are specific to your condition and they also have more time to answer questions than the doctor. Let them know you are trying to educate yourself, and 100% of the time, they are happy to lead you in the right direction because 1) it makes THEIR life easier and 2) an educated patient is more likely to be compliant (meaning they actually follow their treatment plan and lead a healthier life). Just like a coaching staff, your healthcare team should guide you when you’re lost or need help. If your healthcare team makes it difficult to educate yourself, then it’s time to find a new team.
Any blog or discussion board website you visit, please take the information lightly as many of these sites can have subjective info. These are great places, however, to gain insight into different treatment plans and specific side effects. These are also great places to get the help and support you may need to mentally prepare for your treatment plan ahead. I have made many an internet friend who can understand the stress and frustration of treatment more than my “real life” friends. These people will help you through the tough times, and if you have cancer or a serious health condition, I highly suggest you become a part of these boards for mental support.
3 – Keep up-to-date on the info
If you have all (or most) of your questions answered, then you’re doing great! The more you understand, the better you will be at communicating with the doctor at your upcoming visit. If your research has opened up MORE questions than answers, then you need to dive into the nitty gritty and read the research. Try google scholar or pubmed to read free research articles pertaining to your health. There are literally thousands of articles for free on the Internet! Read to your heart’s content!
The treatment arena is CONSTANTLY changing in the field of healthcare. One day, your information is state-of-the-art, the next day there are 10 more treatments on the horizon. To easily navigate the newest research, set a google alert to send you emails with new articles as soon as they hit the Internet. Set as many (or as few) keywords you’re interested in, and Google does the hard work for you. You can even set the frequency of emails you receive. Gotta love the internets, right?
The more you know and understand about your health, the healthier you become. Do your research as preparation for the hurdles down the road. Just as Abraham Lincoln once said, “Give me six hours to chop down a tree and I will spend the first four sharpening the ax.” It’s hard, you WILL hit brain and information overload, and there will be some VERY confusing information out there, but the preparation is well worth having an easier time at the doctor’s office and throughout treatment.
Stay tuned for Step 2 of ‘Getting more out of your doctor’s visit’