Certainly, no one wants to have a chronic disease. And if you have a chronic disease, you don’t want to develop symptoms that can impact your daily life or even lead to a premature death. How well you manage your care, and your health, can impact the course of your illness. But managing a chronic disease, while managing the rest of your life, is often challenging. What are some tips to manage a chronic disease? Read below to learn easy-to-follow tips that can make managing a chronic disease easier.
How many people deal with a chronic disease in the US?
Chronic diseases are broadly defined as conditions that last 1+ year and require ongoing medical care and/or limit activities of daily living. Generally incurable and ongoing, chronic diseases such as heart disease, cancer, and diabetes are the leading causes of death and disability in the US.
If you’re managing a chronic disease, you’re not alone. According to the CDC, 60% of US adults have at least one chronic disease, and 40% have two or more.
Why is it so hard to manage a chronic disease?
I think it’s fair to say that we all want to feel as healthy as possible, including those of us dealing with chronic diseases. For example, no one with diabetes wants to lose a toe or go blind. And no one with asthma wants to struggle to breathe. But following all of your doctors’ recommendations is often easier said than done.
There are many reasons people find it hard to manage a chronic disease, including (but not limited to):
- An incomplete or incorrect understanding of how to properly manage the disease.
- Not understanding the repercussions of ignoring recommendations.
- Difficulty following complicated medication and/or treatment regimens.
- Financial constraints that limit access to care and treatments.
- Difficulty making needed lifestyle changes.
- A lack of support.
If you struggle to manage a chronic disease, you’re not alone. One survey found that almost 50% of people with high cholesterol felt confused, discouraged and/or uncertain about their ability to manage their cholesterol, even though most understood the importance of making recommended changes, which included medication and improvements to diet and exercise.
Another survey found that 91% of patients felt they needed more help from their healthcare providers with chronic disease management. Furthermore, 59% said they could have better self-management, and 20% rated their self-management as “poor”.
What can you do to better manage a chronic disease?
1. Be an active member of your medical team.
To effectively manage a chronic disease, you must actively participate in your care. You cannot sit back and expect your doctor and other providers to take care of everything. You must be the captain of your ship.
Here are some key steps you can take to engage fully in your care:
Communicate effectively with your doctor.
Time squeezed appointments, confusing medical terminology, and intimidating doctors can make it difficult to communicate effectively with your doctor. But it’s worth the effort because research shows that effective communication between the doctor and the patient is linked to:
- Better health outcomes
- More appropriate medical decisions
- Higher patient satisfaction
Effective communication relies on your ability to understand your doctor, as well as your ability to make yourself understood by your doctor. To improve communication, follow these tips:
- Prepare for appointments ahead of time by writing down your “story” and your questions.
- Make sure your doctor listens to your story. If your doctor interrupts you, continue where you left off – don’t get sidetracked. And don’t leave out details because you are tired of repeatedly telling the same story.
- Ask questions until you understand your diagnosis, treatment options and care instructions. Don’t be afraid to ask your doctor to repeat or rephrase information.
- Don’t worry about appearing “stupid”. If you have a question, ask it.
- Whenever possible, get printed information from your doctor.
- Don’t assume you understand everything. Before you leave an appointment, summarize what you heard and ask your doctor if your understanding is correct.
- If something doesn’t seem right, speak up!
- Be honest with your doctor. And with yourself.
For more information, read:
- 10 Tips to Communicate Better with Doctors.
- Understanding Medical Information Is Harder Than Most Realize.
- How Can You Get the Best Healthcare? Actively Participate!
Participate in decision making.
Don’t leave all the decision making to your doctor. Yes, they have more medical knowledge than you, but you’re the expert regarding your own wants, needs, concerns and lifestyle. Importantly, making treatment decisions with your doctor can lead to better outcomes. For instance, researchers found that patients who actively engaged with their providers in decision making are better informed and understand their health care options better. Moreover, these patients tend to make better decisions about their own care, choosing options they are more likely to adhere to. This combination of informed choices along with increased treatment compliance improves the quality of care and lowers costs.
To learn more, read The Importance of Shared Decision Making.
Find a doctor you like.
A strong doctor-patient relationship can help you manage your illness and remain as healthy as possible. Consider switching doctors if you don’t feel you’re receiving adequate care and/or support.
For more information, read When Is It Time To Change Doctors?
Take notes and keep your documents organized.
It’s critical that you take careful, detailed notes during (not after) every appointment. And keep your medical documents, such as test results, organized and available during appointments. These notes and documents are particularly important for 2 reasons:
- Research shows patients forget 40-80% of medical information provided by healthcare professionals almost immediately. Of the information remembered, almost 50% was remembered incorrectly. Having written notes will help you correctly remember important medical information relating to your diagnosis and treatment.
- Your team of doctors and providers do not always share information about your care. Even if your electronic records are accessible to everyone on the team (which they rarely are), there is no guarantee that providers read them before your appointments. Sharing your written notes and documents allows you to convey important information with each member of your medical team.
For more information, read Why Take Detailed Notes at Doctor Appointments?
2. Take your medication as prescribed.
If you are managing a chronic illness, there’s a good chance you take prescription medications. In 2015–2016, 45.8% of the US population used one or more prescription medications in the past 30 days. Unsurprisingly, older people take more medications: 46.7% of adults aged 20–59, and 85.0% of adults aged 60+ used prescription drugs in the past 30 days.
Yet, over 50% of Americans don’t take their medication as prescribed, even though this can lead to a worsening of symptoms and/or a decline in overall health.
What kinds of medication mistakes do patients make? According to research, the most common patient medication errors are:
- Taking the incorrect dose.
- Taking or administering the wrong medication.
- Mistakenly taking a medication twice.
Additionally, patients may take medications at the wrong time, or in the wrong manner (for example, not taking medication with food).
When getting a new prescription, ask your doctor for specifics regarding the why, when and how to take each medication. Write the information down in a notebook. Use a pill organizer and set up a system to remind yourself when it’s time to take a medication.
For more tips related to medication, read my posts:
- Tips to Take Medication as Prescribed.
- Can Your Medication Make You Sicker?
- Dangers of Black Market Medications – More Common Than you Think.
- Are Medications Safe?
- Is Off-Label Medication Safe?
Don’t let money keep you from taking your medications.
Many patients struggle to pay for medication, putting them at risk for worsening health. A 2019 survey of adult patients currently taking prescription medications, found that 24% of adults and 23% of seniors find it “difficult” to afford their prescription medications. Furthermore, 10% said it is “very difficult”. Additionally, 29% report they did not take their medications as prescribed due to cost, and 8% say their condition worsened due to not taking their prescription as recommended.
Fortunately, you can save money on prescription medications in a variety of ways:
For more detailed information, read How to Save Money on Prescription Medications and visit the Zaggo Resource Center for a list of organizations providing financial support for medications.
3. Follow your doctors’ recommendations.
As discussed above, properly taking your medication helps you get as healthy as possible. But what about other recommendations your doctors make? Find out exactly what you need to do to manage your care. Take detailed notes (and refer to your notes often to make sure you stay on track). Additionally, ask for educational resources that could help you understand how to manage your chronic disease.
Of course, following suggestions around lifestyle changes, such as quitting smoking, losing weight, exercising more, and reducing alcohol consumption can impact your health. However, it can feel impossible to make recommended lifestyle changes, even when we know we should. Old habits are hard to break. Be honest with yourself and your doctors. If you can’t make the recommended changes, talk to your doctor about your struggles and ask for suggestions. And don’t be afraid to ask your family and friends to support your efforts.
4. Try not to let financial concerns derail your health.
Managing a chronic disease can break the bank. In addition to medical bills, your health may keep you from working as much as you like or need. What can you do to make sure financial concerns don’t harm your access to healthcare?
- Try to get insurance coverage – through your job, Medicare, Medicaid, or the Affordable Care Act.
- Talk to your doctor and/or a hospital social worker about your financial concerns.
- Visit the Zaggo Resource Center for a list of organizations that provide financial support to patients and families.
5. Consider high-tech help.
There is an ever-increasing list of remote monitoring devices that can help you manage a chronic disease. High-tech devices measure indicators like blood pressure, glucose levels and cardiac activity and send the results via Bluetooth to your doctor. These devices help you monitor your own health while keeping your doctor apprised of any noteworthy changes.
Wondering if there is a device that could help you? I recommend you do a little internet sleuthing to see what’s available and ask your doctor if he/she has any recommendations.
6. Reduce your stress levels when possible.
Life, in general, can feel stressful. Add a chronic disease to the mix and it can seem impossible to manage. However, there are some steps you can take to ease your stress.
Find something that makes you happy and try to squeeze as much of it into your week as possible. Need some inspiration? Perhaps one or more of these will help you: listening to music, reading, taking a walk, talking to friends and family, gardening, taking a bath, watching tv, doing a puzzle, playing a game, or doing some yoga or meditation.
And don’t feel like you have to do everything yourself. Most of us want to be as independent as possible, but it’s not a crime, or a sign of weakness, to ask for help.
Finally, if your stress is taking over your life, consider getting therapy. The right therapist can make a world of difference in your ability to cope. Additionally, consider joining a support group for those with your condition. These groups, either virtual or in-person, can provide a tremendous amount of emotional support. That being said, if you join a group and find it stressful, quit!