Living with a chronic illness requires juggling several responsibilities, from doctor’s appointments and medications to dietary requirements and therapy regimens. It is so easy to become overwhelmed, but, with the right strategies and a little organization, tracking appointments and other critical information can help you feel more in control and empowered.
Keeping track of your personal health information is particularly important if you are dealing with a long-term condition or coordinating care with multiple healthcare providers or institutions.
One issue that I faced with my personal healthcare management was that I didn’t know that I had a long-term illness when I first got sick. Even after getting my gastroparesis diagnosis, I genuinely thought that I would completely recover within a few weeks. So did my health team. As such, I was not taking comprehensive notes.
That was clearly not the case. It’s now been almost a year, and I wish I had taken better notes at the beginning, for both practical reasons, and to look back at how far I have come.
As overwhelming as it may seem, you really do need to manage your own care in order to advocate yourself. Because the health care system is so overwhelmed in Canada, unfortunately, it is easy to fall through the cracks if you don’t stay on top of your own care. This could include tracking appointments, medications, symptoms, and other health information, such as sleep, exercise, and nutrition.
I lost a lot of confidence when I got sick, and I think having a better understanding of everything that was going on would have helped empower me from the start.
I hope that these tips and tricks can help you regain control and confidence in your health journey.
The Foundation: Why Tracking Information Matters
At the heart of effective personal healthcare management lies the practice of tracking appointments, treatments, and other essential information. Here’s why it’s so important:
Improved Communication:
Being able to provide precise information about your symptoms, medications, and treatments allows your healthcare providers to work more efficiently and make informed decisions moving forward. It is also super useful if you work with multiple doctors or ever have to get a new doctor. It’s also helpful if you do something wild, like move to a new province (this is a self-call-out). Also, tracking your appointments helps you never miss something important!
Prevents Medication Errors:
Tracking your medications, dosages, and schedules can help reduce the risk of any errors. It can also help you track how effective your medication is at controlling symptoms. It took me weeks to determine which pain medication worked best for me, and I take different ones depending on what time of day it is. For example, I’m not going to take a medication that makes me groggy right before I go to work.
Empowerment:
Taking an active role in managing your health can empower you to make informed decisions and advocate for yourself. This is something I really didn’t understand when I first got sick. I didn’t think that it was fair that I had to deal with being sick, and on top of that, also had to deal with managing it all. They wanted me to learn about new diseases, medications, surgery options, and other treatments, ON TOP of having to deal with tests, doctors visits, and actually being sick. I hadn’t eaten in weeks, and now I was being told that this was all my responsibility. They wanted me to trouble shoot issues that I didn’t even know existed a few days before.
Tips and Tricks for Effective Tracking:
As a lawyer, I love keeping track of information. I genuinely love both physical and digital planning tools, whether it be a paper planner or excel spreadsheet. I own approximately a million highlighters and have experience managing large amounts of information. Here are some of my best tips in applying my knowledge to the healthcare context:
Health Binder:
The first thing you should do is make a dedicated health binder. This can be a physical binder or a digital folder where you can store all your medical documents, including appointment notes, test results, and insurance information. I keep hospital, clinic, pharmacy, and medical supply store addresses in my binder as well. I like using a physical binder so that I can easily take it with me to appointments.
Health Log Journal:
A daily health journal or notebook allows you to track your symptoms, pain levels, energy levels, and anything else you want to keep track of. For example, as I wasn’t eating, I kept track of how many calories a day I was able to take in. I also kept track of what foods I was able to eat. Once I had the feeding tube, I kept track of how much formula I was taking and at what rates.
Medication Management Apps:
There are medication management apps that send reminders for taking medications, refill notifications, and dosage tracking. I prefer keeping track of this in my normal calendar app, because I no longer take medication on a regular basis. You can also keep note of these on a medication tracking sheet.
Tracking Appointments:
I keep track of my appointments in my paper planner and digital calendar. Keeping track of them in two ways helps ensure I don’t forget or accidentally delete it. Sometimes I set alarms on my phone to remind me of upcoming appointments. I’ve found that most clinics will text or call me a few days before my appointment as a reminder. The hospital (and some clinics) sends me a physical letter with my appointment time, which I immediately copy into both my planner and calendar, making tracking appointments from different clinics and doctors so much easier.
Digital Health Records:
If your clinic or hospital has an online portal where you can access your records, make sure you write down your account information and password in an easy to find place. Ideally, this is in your health binder.
Medication Lists:
Maintain an up-to-date list of all your medications. Include the name, dosage, frequency, and the reason for each medication.
Expense Tracker:
I like keeping track of exactly how much money I am spending on medical supplies and medications all in one place. This is useful if you ever apply for financial benefits, such as disability tax credits. It can also help you keep track of which receipts you have already submitted to insurance, etc.
Some Final Thoughts:
As soon as you receive appointment information, make a note of it – where and when it is, with who, what’s it for, and whether you need to prepare anything in advance. There have been so many times where I have had to call a clinic back because I realized they never actually told me where I was supposed to go. Tracking appointments and important dates is crucial to staying on top of your healthcare.
The same goes for medication. As soon as you get new medicine, add it to a medication tracking sheet.
I have a fear that one day I will pass out in public, either while I am out with friends or at work, and won’t be able to convey any important information. As such, I am very open about my illness, my symptoms, and what might happen to me. If you are not, one suggestion would be to keep an information card in your wallet about your illness and medications.
You can honestly keep track of anything related to your health. I also keep track of my sleep, exercise, and weight through the Fitbit App. If you don’t know what you should be monitoring, ask your doctor, and they can help you figure it out.
Still Feeling Overwhelmed?
You don’t have to do it all at once. I am a lot less diligent in tracking my symptoms than I was at first. I also no longer track exactly how many calories I consume. There will likely come a point where I will have to start doing this again. You might have different priorities throughout your health journey. It’s ok to start with tracking the basics and add more later if need be.
Managing all the information that comes with having a chronic illness might seem overwhelming, but it’s entirely possible with the right strategies in place. By keeping track of these things, you are taking an important active role in your health management journey. With these tips and tricks, I hope you can regain control and confidence in your healthcare journey.