Long-Term Conditions: The Complete Guide

Key numbers at a glance

What a long-term condition is, and why it changes the rules

A long-term, or chronic, condition is one that lasts a year or more and needs ongoing medical attention, limits daily activities, or both. Heart disease, diabetes, chronic kidney disease, COPD, asthma, arthritis, high blood pressure and depression are all common examples. They are extremely common: CDC estimates that about 6 in 10 adults in the US have at least one chronic disease and about 4 in 10 have two or more, and most older adults live with more than one.

Managing a long-term condition is different from getting over a short illness. With an infection, the doctor treats it and you recover. With a chronic condition, the aim is usually to keep it stable, prevent complications and protect your quality of life over many years. That shifts much of the work to you. A person with a long-term condition might spend a few hours a year with clinicians and the remaining thousands of hours making decisions about food, activity, medicines, symptoms and when to seek help.

This is why the most effective care for chronic conditions looks like a partnership. Your care team brings knowledge of the condition and the treatments; you bring knowledge of your body, your life and what matters most to you. Good care combines both. The rest of this guide covers the skills and services that make that partnership work: self-management, regular reviews, medicines, mood and fatigue, activity, costs and planning ahead.

Some groups need particular attention. Young people with conditions such as type 1 diabetes, asthma or epilepsy face a risky moment when they move from pediatric to adult care, often around the end of high school, and planning that handover a year or two in advance helps avoid gaps. Anyone with a chronic condition who may become pregnant should talk to their doctor before trying to conceive, because some conditions need tighter control and some medicines need to be changed before pregnancy. Older adults are more likely to have several conditions at once and to be affected by side effects such as dizziness and falls, which makes whole-person reviews especially valuable.

Living with more than one condition

Having two or more long-term conditions at the same time, sometimes called multiple chronic conditions, brings problems of its own. Clinical guidelines are mostly written one condition at a time. Following several at once can produce conflicting advice, a long list of appointments and an unmanageable number of pills. A blood pressure target that suits one condition may cause dizziness and falls in someone with another; a medicine that helps arthritis pain may strain the kidneys or raise blood pressure.

The time and effort that care takes, sometimes called treatment burden, is a real cost in its own right. Appointments, tests, pharmacy visits, monitoring, diets and exercises all compete with work, family and rest. When the burden becomes too heavy, people understandably start to drop things, and what gets dropped is not always the least important. Saying plainly that the load is unmanageable is not complaining; it is useful clinical information.

The answer is to look at everything together. Ask your primary care doctor to review all your conditions and medicines as a whole, and to agree with you what matters most, whether that is staying independent, avoiding hospital stays, controlling pain or having energy for the people you love. Good care allows for those priorities, which can mean some guideline targets are relaxed or some medicines stopped. Do not stop medicines yourself to reduce the burden; ask for the review instead.

Medicare covers Chronic Care Management services for people with two or more chronic conditions expected to last at least a year. These services provide a care plan and care coordination between visits, including help managing medicines and access to the care team. Copays may apply, so ask your doctor's office whether they offer it and what it would cost you.

• Keep one written list of all your conditions, medicines, doses and recent changes
• Use one pharmacy, so interactions are easier to catch
• Do not assume each specialty doctor knows what the others have prescribed
• Tell your doctor which problem matters most to you right now

Self-management: the work between appointments

Self-management means the day-to-day decisions you make about your own condition: taking medicines, monitoring readings, adjusting activity, eating in a way that supports your health, noticing early warning signs and knowing when to call for help. It is not about doing everything alone. It is about having the knowledge, tools and confidence to act on your plan without waiting for the next appointment.

Structured self-management education programs exist for arthritis, diabetes and other chronic conditions, and they are under-used. CDC recognizes evidence-based programs that teach problem-solving, managing symptoms, working with your care team and dealing with difficult emotions, often in small community groups. Many are low-cost or free. For diabetes, the American Diabetes Association recommends diabetes self-management education and support at diagnosis and at key points afterward, such as when complications develop or care changes, and Medicare and many plans cover it.

A written action plan turns general advice into specific steps. For asthma, it typically uses green, yellow and red zones to tell you which medicines to take when symptoms are stable, when they are worsening, and when to seek emergency care. Similar plans exist for COPD, heart failure and other conditions. Ask your doctor for one, keep it somewhere you and your family can find it, and update it after any change in treatment.

Self-monitoring improves control in several conditions, such as home blood pressure checks for high blood pressure, glucose monitoring for diabetes and daily weights for heart failure. Write readings down or use an app rather than relying on memory, and bring them to visits. Most health systems now have patient portals where you can see results, request refills and message your care team between visits, which is often quicker than waiting for an appointment.

Regular reviews: finding what you cannot feel

Regular scheduled reviews exist to find complications that develop silently. High blood pressure, early kidney damage, diabetic eye disease and nerve damage in the feet often cause no symptoms until they are advanced, when they are harder to treat. That is why reviews matter whether or not you feel well, and why a normal result last year is not a reason to skip this year.

For diabetes, the American Diabetes Association recommends regular checks of A1C, blood pressure and cholesterol, a yearly kidney check using both eGFR (a blood test) and urine albumin, a regular dilated eye exam and a foot exam. For many adults, the A1C goal is under 7% and the blood pressure goal is under 130/80 mm Hg, but your targets should be set with your doctor based on your overall health and risks. For chronic kidney disease, checks use both eGFR and the urine albumin-to-creatinine ratio (UACR), not eGFR alone, because each picks up different kinds of damage.

For asthma, a review covers symptom control, how often you use your rescue inhaler, inhaler technique, and whether your action plan is up to date. Poor inhaler technique is common and easy to fix, so ask to be watched using it. For high blood pressure, reviews cover readings, blood tests to check kidney function and potassium if you take certain medicines, and your overall risk of heart disease and stroke.

Get the most from a review by bringing all your medicines, including over-the-counter products and supplements, and any home readings. Ask for your key numbers and what they mean, and write them down. Book separate tests such as eye exams at the same time, because the parts that need a separate appointment are the ones most often missed. If you have new symptoms, do not wait for the scheduled review.

Managing medicines safely

Many people with long-term conditions take several medicines, and the risks of side effects and interactions rise with each one. Taking five or more regular medicines is common in older adults. That does not mean any one of them is wrong, but it does mean the whole list should be reviewed together at least once a year, and after any hospital stay, by your primary care doctor or pharmacist. The question is not only whether each medicine works, but whether it is still needed, whether the dose is still right, and whether the combination is causing problems such as dizziness, falls, confusion or drowsiness.

Cost is a common and under-reported reason people skip or ration doses. If cost is stopping you from filling or taking a medicine, tell your doctor or pharmacist. It is a medical issue, not an embarrassing one, and it can change what is prescribed. Pharmacists can suggest generics, lower-cost alternatives or a 90-day supply, and many pharmacies offer blister packs or refill synchronization to make complex regimens easier.

Over-the-counter products count too. Common pain relievers such as ibuprofen and naproxen can raise blood pressure and strain the kidneys, decongestants can raise blood pressure and heart rate, and some herbal supplements interact with prescription medicines, including blood thinners. Before buying anything new, ask your pharmacist whether it is safe with your conditions and current medicines. Keep a list of everything you take on your phone, so it is with you if you are seen by someone new or end up in the emergency room.

Sick day rules

Some ordinary medicines become risky during a dehydrating illness, such as vomiting, diarrhea or fever. Depending on your conditions, your doctor may advise pausing metformin, SGLT2 inhibitors, ACE inhibitors, ARBs, diuretics or NSAIDs such as ibuprofen until you are eating and drinking normally again. Other medicines must not be stopped. Insulin should be continued even if you are not eating, usually with more frequent glucose checks, and people with diabetes are advised to check for ketones if blood glucose is over 240 mg/dL. People who take steroids often need a higher dose during illness, not a lower one.

Because the right plan depends on your exact medicines, get a written sick day plan from your doctor before you need it. Keep fluids up, contact your care team early rather than waiting, and wear a medical ID if you take insulin or steroids.

Fatigue in long-term illness

Persistent tiredness is among the most disabling symptoms that people with long-term conditions report, and among the least investigated. It is easy for both patient and doctor to accept it as part of the condition. Yet some causes are treatable, including anemia, thyroid disease, depression, sleep apnea and side effects of medicines. Common first tests include a complete blood count, iron studies, thyroid tests, A1C and kidney and liver function, and a review of your medicine list.

Mention loud snoring, gasping or pauses in breathing during sleep, which can point to sleep apnea, and say whether fatigue started or worsened after a medicine change. Ask directly whether any of your medicines could be contributing.

Fatigue and inactivity feed each other. Being tired makes you do less, and doing less leads to deconditioning, which makes everyday tasks more tiring. Graded activity, building up slowly from a low baseline, helps fatigue in several conditions. In others, especially where exhaustion worsens markedly after effort, pacing is more helpful: spreading activity evenly through the day and week, and stopping before you are exhausted, rather than alternating between overdoing it and crashing. Your care team can help you work out which approach suits your condition. Complete rest tends to make things worse, and caffeine or energy drinks only mask the problem.

Practical habits help whichever approach you use. Plan demanding tasks for the time of day when your energy is usually best, break large jobs into smaller parts with rests in between, and sit for tasks you would normally stand for. Keep a regular sleep schedule, and limit long daytime naps that disturb sleep at night. Do not drive if you are fighting to stay awake.

Mental health and long-term illness

Depression is more common in people with a chronic illness than in the general population. The reasons run in both directions. Living with pain, disability, uncertainty and the demands of treatment is hard, and some conditions and medicines affect mood directly. In turn, depression saps the energy and motivation that self-management takes, and untreated depression is linked to worse self-management and worse physical outcomes.

Low mood is not an inevitable or untreatable consequence of being ill. Talk therapy and medicines can help, alongside care for the physical condition. Raise your mood with the team managing your physical condition as well as with any mental health professional, because the two are connected. If you start an antidepressant, make sure the prescriber knows all your other medicines, since some combinations interact.

See your doctor if low mood, loss of interest, hopelessness or changes in sleep and appetite have lasted most days for two weeks or more. Ask your doctor or your insurer for a referral to a therapist. Keep activity and sleep going as much as you can, since both affect mood directly, and avoid using alcohol to cope. For treatment referrals, SAMHSA's National Helpline (1-800-662-4357) is free and confidential. If you have thoughts of harming yourself, call or text 988 at any hour.

Anxiety is common too, and it is not limited to worry about the future. Many people with long-term conditions describe a specific kind of strain that comes from the constant attention their condition demands: the readings, the decisions and the fear of getting it wrong. In diabetes this is sometimes called diabetes distress. It is worth naming to your care team, because simplifying a regimen, adding support or joining a peer group can ease it.

Staying active with a long-term condition

Physical activity is recommended in almost every long-term condition, including heart disease, COPD, diabetes, arthritis, depression and recovery from cancer, and it is often under-prescribed compared with medicines. It can improve blood glucose, blood pressure, joint pain and stiffness, breathlessness, mood, sleep and fatigue, and it helps you stay independent.

The general target for adults is 150 minutes of moderate activity a week, plus muscle-strengthening activities on 2 days, with balance activities added for older adults. If your condition means you cannot meet that, the guidelines are clear: be as active as your condition allows, because some activity is better than none. Start below what feels possible and build slowly, adapting the activity rather than abandoning it when you hit a problem. Water exercise, stationary cycling, chair-based routines and walking in short bouts are all options.

Supervised programs make a big difference for some conditions. Cardiac rehabilitation and pulmonary rehabilitation are covered by Medicare for eligible people and are designed for those who are anxious about exercising. For arthritis, CDC recognizes evidence-based walking and exercise programs that are offered in many communities.

Talk to your doctor before starting if you have unstable angina, uncontrolled blood pressure, a recent heart event, or symptoms that have not been diagnosed. Do not exercise through warning symptoms. Stop and call 911 for chest pain lasting more than a few minutes, severe breathlessness or fainting during exercise.

Costs and financial support

Long-term conditions cost money, through premiums, copays, medicines and equipment, and they can also reduce income. A large amount of available help goes unclaimed because people assume they will not qualify. It is worth checking each of the options below rather than guessing.

If you have Medicare, Extra Help lowers prescription drug costs for people with limited income and resources, and Medicare Savings Programs can help pay Part B premiums and other costs. Covered insulin costs no more than $35 a month under Medicare drug coverage, and Medicare drug plans now have a yearly cap on out-of-pocket spending for covered drugs. Free, unbiased help comparing Medicare plans is available from your State Health Insurance Assistance Program (SHIP).

Medicaid covers eligible people with low income, with rules that vary by state, and many people qualify for both Medicare and Medicaid. If you buy your own insurance through the Marketplace at HealthCare.gov, subsidies can lower your premiums based on household income, and some plans also reduce copays and deductibles. Pregnant people with chronic conditions should know that Medicaid covers many pregnancies, and most states extend postpartum coverage to 12 months.

Ask your pharmacist about generics and lower-cost alternatives, and ask your doctor about manufacturer patient assistance programs for expensive medicines. Do not skip or split doses to make medicines last without talking to your doctor. In an emergency, call 911 regardless of cost: emergency rooms must screen and stabilize you whether or not you can pay.

Working with your care team

When you see several services, nobody automatically holds the whole picture unless you or someone you trust does. Records do not always follow you between health systems, and each specialty doctor may focus on their own part. Keeping one written, up-to-date list of your conditions, medicines, allergies and recent changes, and bringing it to every appointment, is one of the simplest and most effective things you can do.

Shared decision-making means you and your clinician weigh the options, benefits and risks together, taking account of what matters to you. You can help it happen. Start the visit by saying which problem matters most to you today, rather than leaving your most important question until the end. Ask what the options are, including doing nothing for now, and what each would mean for your daily life. Say if you do not understand; nodding along helps no one.

You can ask for longer appointments, a family member or friend in the room, or a chaperone. Free language assistance, including interpreters, is required in most health care settings that receive federal funds, so ask for it rather than relying on family to translate. Before leaving, confirm what happens next, when, and what would bring you back sooner. Use the patient portal to see results and visit notes, and to message your team between visits.

If a family member or friend helps you manage your health, decide how involved you want them to be and put it in writing. You can sign a form allowing your care team to share information with them, and many patient portals let you give a trusted person their own proxy access. Bringing someone to important appointments to take notes means you can concentrate on the conversation, and they can remind you later of what was said.

Planning ahead for changes in your health

Long-term conditions can change, sometimes suddenly. Decisions about treatment get made either way, and planning ahead is the only way they are made by the person they concern. Advance care planning means thinking about what matters to you, talking it through with the people close to you and your care team, and recording your wishes in documents that will be honored.

A living will records which treatments you would or would not want in particular circumstances. A health care power of attorney names someone, often called a health care agent or proxy, to make medical decisions for you if you cannot. Do not assume a spouse or relative can automatically decide for you; the rules vary by state. For people with serious illness, portable medical orders, often called a POLST form, are signed by a clinician and translate your wishes into orders that emergency responders can follow.

Forms and legal requirements vary by state, so use your state's forms rather than a handwritten note or a form from a different state. Medicare covers advance care planning conversations with your doctor, including as part of the yearly Annual Wellness Visit. Give copies to your doctor and your health care agent, keep the originals where they can be found, and review the documents after any major diagnosis or hospital stay. Most importantly, talk about your wishes, not only write them down, so the people who may have to act on them understand why.

A yearly plan for living well with a long-term condition

Long-term conditions reward steady habits more than bursts of effort. This yearly rhythm gathers the essentials into a small number of fixed points, so fewer things slip through the gaps. Adapt it to your own conditions with your care team.

Put the dates in your calendar at the start of the year, and treat them like any other appointment you would not miss.

• Every day: take medicines as planned, follow your action plan, and keep active within your limits
• Every week: record the readings that matter for your condition, such as blood pressure, glucose or weight
• Every few months: check your readings against your targets, and contact your team if they are drifting
• Every year: have your scheduled review, including eye, foot and kidney checks if you have diabetes
• Every year: ask for a full medication review with your doctor or pharmacist
• Every year: get a flu vaccine and ask which other vaccines you are due
• Every fall: review your insurance or Medicare plan during open enrollment, using SHIP if you have Medicare
• After any hospital stay or new diagnosis: update your medicine list, action plan and advance directives

Every guide in this topic

• What the Guidance Really Says About Living with Multiple Conditions
• Self-Management: What Published Guidance Supports
• What the Guidance Really Says About Annual Reviews
• What the Guidance Really Says About Fatigue in Long-Term Illness
• What the Guidance Really Says About Mental Health and Long-Term Illness
• What the Guidance Really Says About Sick Day Rules
• Talking to Your Care Team: What the Evidence Actually Says
• What the Guidance Really Says About Benefits and Financial Support
• Exercise with a Long-Term Condition: Sorting the Evidence From the Noise
• What the Guidance Really Says About Planning for Deterioration

Frequently asked questions

What counts as a long-term condition?

A long-term, or chronic, condition is one that lasts a year or more and needs ongoing medical attention, limits daily activities, or both. Common examples include high blood pressure, heart disease, diabetes, chronic kidney disease, asthma, COPD, arthritis and depression. Many people live with more than one, which is why care that looks at everything together matters.

I take a lot of medicines. Can some be stopped?

Possibly, but do not stop any yourself. Ask your primary care doctor or pharmacist for a review of all your medicines together, including over-the-counter products and supplements. They can check whether each is still needed, whether doses are right, and whether the combination is causing problems such as dizziness or falls. Some medicines need to be reduced gradually rather than stopped suddenly.

Why do I need a review when I feel fine?

Because many complications of long-term conditions develop silently. Early kidney damage, diabetic eye disease, nerve damage in the feet and high blood pressure often cause no symptoms until they are advanced. Regular reviews are designed to find these problems early, when they are easier to treat. That is the point of attending whether or not you feel well.

What is a self-management program and is it worth it?

Self-management education programs teach practical skills for living with a chronic condition: managing symptoms, solving problems, using medicines well, communicating with your care team and handling difficult emotions. CDC recognizes evidence-based programs for arthritis, diabetes and other conditions, often run in small community groups at low or no cost. They are under-used, so ask your doctor or local aging services what is available.

What should I do with my medicines if I get a stomach bug?

It depends on your medicines, so get a written sick day plan from your doctor in advance. Some, such as metformin, SGLT2 inhibitors, certain blood pressure medicines, diuretics and NSAIDs, may be paused on your doctor's advice during a dehydrating illness. Insulin should not be stopped, and steroids often need a higher dose. Contact your care team early if you cannot keep fluids down.

Is constant tiredness just part of my condition?

Not necessarily. Fatigue is common in long-term illness, but treatable causes such as anemia, thyroid disease, depression, sleep apnea and medicine side effects should be checked first. Ask your doctor about simple blood tests and a medicine review. Pacing or gradually building activity often helps more than complete rest. See your doctor for fatigue with weight loss, night sweats or breathlessness at rest.

How can I afford my medicines?

Tell your doctor or pharmacist if cost is a problem, because it can change what is prescribed. Ask about generics, lower-cost alternatives and manufacturer assistance programs. If you have Medicare, check whether you qualify for Extra Help; covered insulin costs no more than $35 a month. Your State Health Insurance Assistance Program offers free help comparing plans. Do not skip or split doses without advice.

Is it safe to exercise with heart disease, COPD or arthritis?

For most people, yes, and activity is recommended in all three. Start below what feels possible and build up slowly. Supervised cardiac and pulmonary rehabilitation programs are designed for people who are anxious about exercising. Talk to your doctor first if you have unstable angina, uncontrolled blood pressure, a recent heart event or undiagnosed symptoms. Stop and call 911 for lasting chest pain or fainting.

Can my spouse make medical decisions for me if I become too ill?

Not automatically. Who can decide for you depends on your state's law, and the person you would choose may not be the one the law picks. The reliable way is to name a health care agent in a health care power of attorney, using your state's forms, and to talk with them about your wishes. Give copies to your doctor and your agent.

What is Chronic Care Management?

Chronic Care Management is a Medicare-covered service for people with two or more chronic conditions expected to last at least a year. Your doctor's practice creates a care plan and coordinates your care between visits, including help with medicines and access to the care team. Copays may apply, so ask your doctor's office whether they offer it and what it would cost you.

When to speak to a doctor

Follow the red-flag section of your own action plan, and contact your doctor promptly for any symptom it names or any change it does not cover. Get prompt medical care for a sudden decline in function, new confusion, an unexplained fall, or dizziness and drowsiness after a medicine change. Contact your doctor urgently during an illness for vomiting that will not stop, passing much less urine, drowsiness, or moderate or high ketones. Call 911 for chest pain, severe breathlessness, signs of a stroke, fainting, or, if you take steroids, severe weakness, vomiting or collapse. If you have thoughts of harming yourself, call or text 988 at any hour.

Where this comes from

• CDC — About Chronic Diseases
• HHS — Multiple Chronic Conditions: A Strategic Framework
• CMS — Chronic Care Management Services
• CDC — Self-Management Education: Learn More. Feel Better.
• American Diabetes Association — Standards of Care in Diabetes
• National Kidney Foundation — Know Your Kidney Numbers: Two Simple Tests
• National Institute of Mental Health — Chronic Illness and Mental Health: Recognizing and Treating Depression
• Medicare.gov — Help with drug costs
• Office of Disease Prevention and Health Promotion — Physical Activity Guidelines for Americans, 2nd edition
• National Institute on Aging — Advance Care Planning: Advance Directives for Health Care

How this page was put together

Every figure, recommendation and warning above is taken from the guidance named in Where this comes from. Nothing on this page is inferred, summarized or generalized beyond what those bodies publish: where they give a number, it is their number, and where they are silent, so are we. Pages are rebuilt whenever the underlying record changes. Sign-off by a named clinician, where it has happened, is shown at the top of the page along with the date.

Medical disclaimer

This article is general information, not medical advice. It cannot account for your own history, medication or circumstances. Always speak to your doctor, pharmacist or another qualified health professional before making changes that affect your treatment, and never delay seeking medical advice because of something you have read here. In an emergency, call 911.