You’ve just seen your doctor and they told you that you have a chronic disease, or you’ve been struggling with one (or more) for years now. You may be overwhelmed with the amount of information your doctor gave you about your new disease, or maybe you weren’t given any at all.  The doctor may have explained how to use that new glucometer they ordered for you, but perhaps they failed to tell you what to do with the results once you get them – or they made you aware of a new medication but didn’t warn you about what it could be like to deal with your insurance company to try to get it.

Medicine is getting more and more complicated every day. Patients are living to later ages with more complex diseases. It has never been so imperative that patients act like their own change-agents and take charge of their health and chronic diseases.

How can a patient manage a chronic disease?

• Ask questions! So many patients tell me they saw another doctor but didn’t understand what they were told. I try to help them put the puzzle together but sometimes it is impossible without knowing the exact thought processes of the other specialist. I encourage patients to write down their questions before they see their doctors, and not to leave each appointment until the questions for that doctor have been answered by that doctor.
• Know your medications! I see many patients who are on medications but don’t know what these medications are or what specifically they are being used to treat. Imagine you go into a restaurant and the owner told what to eat but not why or what to expect – would you do it? Probably not! When it comes to your health, you should know exactly what you are putting into your body and why. There are so many resources available now that you have literally libraries of information at your fingertips. Be careful to use only reputable ones or ask your doctor which ones they recommend. Curious how to tell reputable information from junk?
• Monitor the state of your chronic disease. “Disease state” means the day-to-day impact your disease is having on your life, and doctors like me need to know what’s going on to help you. If your doctor advises you to check your blood sugar or blood pressure at home, do it: you be able to share the data with your doctor and tailor your treatment plan together, and get reams of useful information that help you make lifestyle choices too. Maybe your high blood pressures happen only on the days you chug gallons of coffee. Maybe your blood sugar is too high after your pasta nights. Your doctor can’t see that type of connection between your daily choices and your disease state, and the patterns won’t be clear to you and those who help manage your condition if you aren’t tracking your disease.
• Eat healthy. This is true for any disease state as well as people who haven’t been diagnosed with any. Healthy eating can truly have a positive influence on overall health. If you don’t know how to eat healthy for your disease state, ask for a referral to see a nutritionist. No, you don’t need to become an ultra-marathoner, but much recent research demonstrates that even modest amounts of exercise can increase years of life. Aim for thirty minutes, five days a week of both cardio (something that makes you out of breath) and strength training (something that builds muscles up).
• Don’t accept everything your told – by your doctor or resources you find. If something doesn’t seem right to you, speak up. I recently saw a patient with an uncontrolled thyroid and another doctor was adjusting her medication up (instead of down, as it should have been). If you question your doctor’s assessment, ask for a second opinion. This is their occupation but your health – who has more invested? If you don’t think you can ask your doctor real questions you have and collaborate to make sure everything is on the up and up, it might be time to find a new doctor.
• Fight! Every single time your insurance company tells you they won’t pay for a medication your doctor prescribed because it is “not medically necessary” or “non-formulary,” fight their decision – the doctor who is treating you directly knows what you need way better than a gigantic insurance company, and it probably comes as no surprise that they have other reasons for denying you coverage. File a complaint and ask your doctor to file an appeal. I’ve seen patients doing well on a certain medication for years suddenly decompensated when forced to switch to another medication by their insurance company – you don’t want that, and neither does your doctor, so work together to get what you need.
• Keep a copy of your records. We all know the power of data and the promise of how electronic medical records are going to (someday… maybe) revolutionize medicine – but right now, there is no real connection between electronic health record systems in the United States. Different hospitals and practices use different systems that don’t play nicely with each other, so it is still just as difficult to transfer e-records between medical centers as it would be to move paper copies between them. If you have your own copy, you can track how your cholesterol is doing, or see that your HbA1C has jumped and you need to do something about it. Many patient portals now allow you to have access to these reports, but many practices do not have active portals. Instead, try asking at your office visit for a copy of your labs and other diagnostic tests. When I see patients, I have a copy of those reports in my hand and will give it to them (or shred them, if the patient doesn’t want them).

There are many advocates out there, and unfortunately many who proclaim themselves to be such. Reputable groups can be helpful in keeping you informed about your specific chronic disease and the best know that no one can advocate for you like you (and will help you take the lead). If you have a chronic disease, learn as much as you can about it as well as treatment options available, and even though it might be tough, never be afraid to speak up and ask questions. As doctors, we see patients who created power point presentations on what medications they are taking, and patients who got “a little white pill” from Mexico but don’t remember the name or why it was prescribed – we just don’t know how much you know or need to know when you walk into our offices. If you have unanswered questions, you need to know more – take charge of your help, we’re here to assist.

About the Author
Linda Girgis MD, FAAFP is a family physician practicing in South River, New Jersey. She was voted one of the top 5 healthcare bloggers in 2016. Follow her on twitter @DrLindaMD.