Living with chronic illness

Chronic illnesses are very common. Many are managed day to day rather than “cured”. That can mean appointments, tests, symptoms that change from week to week and a lot of planning around your body.

It can bring

• Changes to work, school, money or plans
• Good days and bad days that are hard to predict
• Lots of appointments and paperwork
• Tiredness (fatigue) that rest does not fully fix
• Worry about the future

Three in four American adults have at least one chronic condition, and more than half have two or more. Juggling several conditions can mean more appointments, more self-care and more to explain.

What can help

• Ask one provider to help see the whole picture
• Bring all your notes to each visit
• Keep one list of your conditions, care team and contacts
• Tell each provider about the others you see

Many long-term conditions do not show on the outside. Pain, fatigue, dizziness, gut problems and brain fog are often invisible. People may say “But you look fine!” while you are working very hard just to get through the day.

People with a chronic disease have a higher risk of depression. People with depression also have a higher risk of conditions like heart disease, diabetes, stroke and pain. When both happen together, symptoms of each tend to be more severe.

In the first days, it is common to feel foggy, to forget what the doctor said, or to replay the news over and over. Big feelings may arrive later, once the news sinks in.

What can help

• Ask for information in writing, or bring someone to take notes
• Give yourself time before big decisions, unless your team says it is urgent
• Lean on one or two trusted people
• Take things one day, or one appointment, at a time

Waiting for test results, going from specialist to specialist, or being told “we don’t know yet” can be one of the hardest parts of being unwell. The mind tends to fill gaps with worst-case stories. You may also feel stuck, unable to plan or explain to others what is wrong.

Some conditions are especially hard to diagnose. For example, more than 9 in 10 people with ME/CFS have not been diagnosed by a doctor, partly because there is no single test for it.

What can help

• Ask: “What is the next step, and when will I hear back?”
• Focus on things you can control today: sleep, meals, a short walk, a call with a friend
• Keep a simple record of symptoms, tests and appointments
• Name the feeling: “This is uncertainty. It’s hard, and it’s normal to hate it.”
• Set a “worry time” each day, and gently put worries aside outside it

Learning how your condition works can help you feel more in control and ask better questions. But late-night searching can also feed fear, especially when you land on worst-case stories or people selling cures.

Tips

• Ask your care team which websites they trust
• Be wary of anyone selling a “cure”
• Look for national health agencies and well-known charities for your condition
• Write down questions to bring to your next visit
• Set a time limit on searching, especially at night

Some people tell everyone right away. Others share with one trusted person first. Both are okay. You might share different amounts with family, friends and work.

Things to think about

• What kind of support you want from each person
• How much detail you want to give
• Whether you want them to tell anyone else
• Who helps you feel calmer, not more anxious

Fatigue is more than being sleepy. It can feel like your battery is drained even after rest. Brain fog can make it hard to focus, find words or remember things. Both are common with long-term illness, and both can make low mood worse.

What can help

• Break tasks into smaller pieces with rests in between
• Plan demanding tasks for your best time of day
• Tell people you trust what fog feels like for you
• Use lists, phone reminders and calendars

Some people picture their energy as a set number of “spoons” or coins each day. Showering might cost one, a work meeting three, a family visit four. When you run out, borrowing from tomorrow usually costs extra.

Try this

• Drop, delay or delegate what isn’t essential
• List your tasks for the day and give each a rough “cost”
• Put the most important things first
• Save a little energy for something you enjoy

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious long-term illness. It brings severe fatigue not improved by rest, problems with thinking and sleep, dizziness and pain. Symptoms can get worse after any activity, physical or mental. This is called post-exertional malaise (PEM).

PEM often hits 12 to 48 hours after the effort and can last days or weeks. That delay makes it hard to judge what an activity will cost. The CDC describes pacing as learning to balance activity and rest so you stay within your limits, sometimes called your “energy envelope”.

What can help

• Avoid “push and crash”: on a good day, still stay inside your limits
• Keep an activity and symptom diary to find your limits
• Plan rest after mental effort, too, not only physical effort
• Remember that everyday tasks like shopping or socializing count as effort

Many people feel guilty or “lazy” for resting, especially in a culture that praises being busy. With a long-term illness, planned rest is a tool that helps you do more of what matters.

Ideas

• Lie down before you are exhausted, not after
• Schedule rest in your calendar like an appointment
• Try quiet rest without screens, if screens drain you
• Tell family that rest time is protected

People with a chronic disease have a higher risk of depression. Stress from living with illness, changes in the body and worry about the future can all play a part. When both happen together, each can make the other feel worse.

Experiences people often describe

• Big changes in sleep or appetite
• Constant worry about your health or the future
• Feeling guilty or like a burden to others
• Feeling sad, empty or hopeless most days
• Losing interest in things you used to enjoy
• Pulling away from friends and family

Some of these, like tiredness and trouble focusing, can come from the illness itself, from low mood, or from both. Only a qualified professional can tell what is going on, so talk with your care team about how you feel, not only how your body feels.

Illness can mean missed days, slower work, or needing to change jobs or courses. That can bring money worries and a fear of being judged as “unreliable”. Many people push through and then crash, which makes things harder.

In the U.S., the Americans with Disabilities Act (ADA) protects people whose condition substantially limits a major life activity, people with a history of such a condition (such as cancer in remission), and people treated as if they have one. “Substantially limits” is meant to be read broadly. Employers with 15 or more employees are covered.

Things that can help

• Ask about changes at work or school, like flexible hours, breaks, a different chair or working from home
• Plan rest breaks into your day, not just when you are already exhausted
• Students can ask the school’s disability or support office

Illness can shift roles at home. Someone who used to do the heavy lifting may need help now. Partners may become part-time carers. Friends may drift if you often cancel. All of this can bring guilt, frustration and loneliness on both sides.

What can help

• Explain your condition in simple words, or share a trusted article
• Keep visits shorter but more frequent
• Make room for each other’s feelings, not only for the illness
• Suggest low-energy ways to connect, like a phone call or a movie at home

Many people tie who they are to what they do: their job, their sport, being the one who helps everyone. When illness takes some of that away, it can shake your sense of self. You might feel like a different person, or like you lost the “real you”.

Ways to rebuild

• Connect with others who live with similar conditions
• Find new ways to live those values that fit your body now
• Notice the values underneath what you used to do (care, creativity, loyalty, curiosity)
• Try something new and small, just to see how it feels

Long-term illness often brings medical bills, insurance calls, time off work and endless forms. Money stress can make both mood and health harder to manage.

What can help

• Ask a hospital social worker or patient navigator what help exists
• Ask the billing office about payment plans or financial help
• Keep one folder (paper or phone) for bills, letters and claims
• Let a trusted person help with calls on bad days

People understand stories and comparisons more easily than medical terms. Choose one or two clear examples of how your condition affects a normal day.

You could say

• “I have a limited amount of energy each day. If I spend it all in the morning, there is none left for the evening.”
• “Imagine having the flu every day, but still going to work.”
• “Some days are good and some are bad. A good day doesn’t mean I’m cured.”

When others doubt you, it is easy to start doubting yourself. Keeping a simple diary of your symptoms can remind you that what you feel is real and has a pattern. It is also useful for appointments.

Reminders

• Asking for help is not weakness or attention-seeking
• Find at least one person or group who believes you
• You can step back from people who keep dismissing you
• Your experience is real, even without a clear test result

Most clinicians want to help, but appointments can be short and some conditions are hard to pin down. If you feel dismissed, you can calmly say so, ask what else could be explored, or ask for a referral or a second opinion.

Things you can say

• “Could you note in my record that we discussed this?”
• “I feel like we haven’t found the cause yet. What else could we look at?”
• “I’d like a referral to a specialist.”
• “This is really affecting my life. Here is what I can’t do anymore.”

Using a priority seat, a disabled parking space or a lift can bring stares or comments when your condition doesn’t show. You may feel you have to “prove” you are unwell, or hide how you feel to avoid questions.

What can help

• Have a short line ready: “I have a health condition that you can’t see.”
• Remember that you don’t owe strangers your medical details
• Some people choose to wear a badge or lanyard that signals a hidden disability
• Talk with others who live with invisible illness about how they handle it

Diabetes asks for attention every single day: checking, planning meals, appointments and more. Feeling discouraged, worried, frustrated or worn out by all this has a name: diabetes distress. It can lead people to skip checks or visits, which can make things harder.

People with diabetes are 2 to 3 times more likely to have depression than people without diabetes, yet many never get diagnosed or treated.

What can help

• Ask for a referral to a counselor who works with chronic conditions
• Meet with a diabetes educator to problem-solve together
• Set one or two small goals instead of trying to change everything at once
• Stay active, even with a short walk
• Talk with a supportive friend
• Try relaxation like meditation or yoga

A heart attack, surgery or diagnosis can be frightening. Many people feel anxious about every twinge, nervous about being active again, or low about changes to their life. Depression can also raise the risk of heart disease, through things like stress hormones, inflammation and making healthy habits harder.

What can help

• Ask whether a cardiac rehabilitation program is right for you. It combines safe exercise, education and support
• Learn which symptoms need urgent help, so everyday twinges feel less scary
• Return to activities step by step, with your care team’s guidance
• Share worries with your family, so you are not carrying them alone

In autoimmune diseases, the immune system mistakenly targets the body’s own healthy tissues. Examples include rheumatoid arthritis, lupus, psoriasis, Sjogren’s disease, scleroderma, alopecia areata and vitiligo.

Many people with these conditions live with flares that come and go, tiredness, pain and changes in appearance. Symptoms can be invisible or hard to explain, and getting a diagnosis can take a long time. That uncertainty and unpredictability can be very stressful.

What can help

• Find a support group for your condition
• For visible conditions, practice a short, calm answer to questions about your skin or hair
• Keep a symptom and mood diary to spot patterns and triggers
• Use energy budgeting, and a flare plan (see the “Chronic pain” guide)

An HIV diagnosis can shake your sense of well-being. Many people feel shock, fear, anger or shame at first, and then slowly find their footing. Depression is one of the most common mental health conditions among people living with HIV, and it is treatable.

Today, many people with HIV who stay in regular care live long, full lives: working, loving, raising families and growing older. The emotional side, though, often needs as much attention as the medical side.

Stigma: what it is and why it hurts

• Stigma is negative attitudes and beliefs about people with HIV, such as thinking only certain groups get HIV, or that people “deserve” it
• Discrimination is how those beliefs turn into action: refusing care, avoiding casual contact, isolating someone, or calling people hurtful names
• Self-stigma (or internalized stigma) is when a person starts to believe those negative ideas about themselves
• Internalized stigma can lead to shame, fear of telling anyone, isolation and despair, and can keep people from getting tested or staying in care

Telling people about your HIV status is called disclosure. Whether you share with friends, family or co-workers is your decision. In most cases, they won’t know unless you tell them, and your medical information is protected by federal privacy law.

Thinking about disclosure

• Telling sex partners and anyone you have shared needles or injection equipment with is important, even when it feels uncomfortable. If you are afraid, or have been threatened or hurt by a partner, your doctor or health department can notify partners without giving your name
• Some states have laws about disclosing before sex or sharing needles, so check your state’s rules
• You can share with some people and not others. Many people start with one very trusted person, or practice with a counselor first
• Your employer usually won’t know unless you tell them, and the Americans with Disabilities Act protects people with HIV from job discrimination
• Hearing how others shared their status can help. HIV.gov’s Positive Spin stories are one place to start

What can help your mental health

• Exercise regularly to ease stress and lift mood
• Join an HIV support group or a mental health support group, in person or online
• Reach out to a friend, loved one or someone in your faith community
• Talk with your HIV provider, social worker or case manager about how you feel
• Try mindfulness, CBT or stress management

Epilepsy is a brain condition that causes repeated seizures. About 2.9 million U.S. adults had active epilepsy in 2021, and about 456,000 children aged 17 and younger had active epilepsy in 2022.

Living with epilepsy is about more than seizures. The Epilepsy Foundation explains that it can also affect mood, emotions, relationships and quality of life. Mood and behavior changes are common, and support is available.

Why mood can be affected

• Changes in independence, such as driving, work, sports or where you live
• Other health conditions. For anything about treatment, talk with your clinical provider
• Seizures themselves. Some people notice mood or behavior changes before, during or after a seizure
• Sleep problems, which can affect both seizures and mood
• Stress and constant uncertainty about when the next seizure will come

Many people describe a constant background worry: “What if I have a seizure in public? What if I’m alone?” Losing the freedom to drive or do certain activities can also bring frustration, sadness and anger. Stigma can leave people feeling judged or left out, so some keep their diagnosis secret or pull back from social life.

What can help

• Ask for a referral to a therapist. CBT can help with worry and low mood
• Find new ways to stay independent, such as rides, transit apps or remote work
• Join an epilepsy support group, where others understand the uncertainty
• Keep a simple mood diary and note whether low or anxious days happen around seizures. Share it with your care team
• Make a seizure plan with family, friends, school or work, so you feel less alone if one happens
• Protect your sleep with regular bed and wake times

Talk to your care team if feelings…

• Affect your relationships, work or school
• Feel severe or hard to manage
• Last for several weeks or longer
• Make it harder to manage your epilepsy

Experts in transplant care describe it as an “existential turning point”: a moment that changes life emotionally and socially, not only physically. A transplant does not simply erase the stress of being very ill. It changes its shape.

The wait itself can be exhausting. People on waiting lists often describe living in limbo between hope and despair, staying constantly ready for “the call”, feeling their sense of self change as they become more dependent, and pulling back from friends because of illness and unpredictability.

Feelings many recipients describe afterwards

• Fear of rejection or of the illness coming back, even when doctors say things look good
• Identity questions: getting used to having another person’s organ inside your body, and rethinking your body and sense of self
• Survivor’s guilt: complex feelings about receiving an organ, especially when it came from someone who died
• The “cured but not cured” puzzle: feeling well, yet needing lifelong medical care
• With a living donor: gratitude, guilt, a sense of owing a debt, and changes in the relationship

Low mood is common after a transplant, and it matters. When people feel depressed, it can be much harder to keep up with appointments and the daily care a transplant needs. Depression can be spotted early and treated, and psychological support is a normal part of good transplant care.

What can help

• Ask your transplant team about a psychologist, social worker or counselor who knows transplant care
• Expect ups and downs, especially around check-ups and anniversaries
• Join a transplant recipient support group to meet people who truly understand
• Name the “survivor’s guilt” thought, and gently remind yourself: the donor’s gift was freely given, and living well honors it
• Talk openly with a living donor about how you both feel. A counselor can help guide that talk
• Write a letter to your donor’s family, if your program offers this. Many people find it helps them process gratitude and guilt, even if they never send it

Losing a limb is a life-changing experience that can touch nearly every part of life, from work and play to friends and family. How people respond depends on many things: the cause (born without a limb, an injury, or an illness), age and health, money worries, personality and past coping, and whether support is in place.

Grief is a natural reaction to losing a limb. People may feel shock, denial, anger, sadness and fear, often in waves and in no set order. Research has found that depression, anxiety, grief and trauma are the most common emotional concerns after limb loss. If the amputation followed an accident or a frightening event, nightmares and flashbacks can happen too.

Phantom limb feelings, in plain words: many people still feel the missing limb as if it were there. It might itch, tingle, feel warm or cold, or seem to be in a strange position. Sometimes it hurts. This is real, not imagined. Your brain needs time to relearn and rewire.

About phantom limb pain

• Approaches like mirror therapy (guided by a physical therapist), CBT, biofeedback, massage and mindfulness may help. Ask your clinical provider what fits you
• It is often strongest in the first six months, then usually becomes less intense and less frequent
• Over half of people who lose a limb experience phantom pain
• Pain in the remaining part of the limb (residual limb pain) is different and often has a medical cause, so tell your care team
• Tiredness, stress, anxiety and low mood can set it off or make it worse, which is one reason emotional support matters

Body image can be one of the hardest parts. It is normal to go through a time of reacting negatively to your body, or avoiding mirrors. Over time, many people move from “enduring” and “suffering” towards reconciling, regaining control and building new routines. Some even describe feeling stronger than before and want to help others.

What can help

• Ask your rehab team about a psychologist or counselor alongside physical therapy. Mental recovery is as important as physical recovery
• Join a limb loss support group, in person or online
• Practice a short, calm answer for questions from strangers
• Request a peer visit from the Amputee Coalition: a trained volunteer who has lived with limb loss (call 888-267-5669)
• Return to activities you love in adapted ways, such as adaptive sports, art or music
• Set small rehab goals and celebrate each one

Some people have symptoms that last long after a COVID-19 infection. Common ones include extreme tiredness, shortness of breath, aching joints and muscles, and memory and concentration problems (“brain fog”). Symptoms can come and go, and may get worse with stress or activity. Anxiety and low mood are also common.

What can help

• Join a long COVID support group, local or online
• Keep a symptom diary to see what makes things better or worse
• Keep regular sleep and wake times
• Move gently and stop if symptoms appear. Speak to your provider before restarting exercise
• Talk to your employer or school if things are getting hard

Talking therapies like CBT can help with anxiety, low mood and coping with fatigue.

Grief for health is often “ongoing” because the illness is ongoing. You might feel at peace for months, then a flare or a friend’s holiday photos brings the sadness back. That does not mean you are going backwards.

What can help

• Let yourself feel sad, angry or jealous without judging it
• Mark the good things that are still here
• Name the loss out loud or in writing
• Talk with someone who gets it

Over time, many people find a kind of acceptance. It is not saying “This is fine” or giving up on treatment. It is saying “This is my life right now, and I want to live it as fully as I can.” This idea is at the heart of acceptance-based therapies.

Small ways to start

• Adapt a loved hobby (seated gardening, audiobooks instead of reading, short walks instead of runs)
• Set goals around what matters to you, not just around symptoms
• Try one new interest that suits your energy

With conditions that flare and settle, it can feel like losing your life again each time symptoms return. Hope during a good stretch can make a setback feel even harder.

What can help

• Plan for flares on a good day, so setbacks feel less like failure
• Remind yourself that a setback is not the whole story
• Share the hard days with someone, not only the good ones

Losing independence is one of the hardest parts of illness. Doing everything for someone can feel loving, but it may leave them feeling helpless. Ask what they want to do themselves, and offer help with the parts that are hardest.

Try

• “Do you want a hand with that, or would you rather do it?”
• Celebrate what they can do, not only what they can’t
• Let them make choices about their care

Big medical moments often bring a rush of support at first, then quiet. Yet the hardest weeks may come later: after the hospital, or when the reality of a changed body sinks in. That is when steady, low-key support matters most.

Ways to show up

• Ask about feelings, not just progress: “How are you doing with all of it?”
• Help them find a peer group, such as a transplant, limb loss or epilepsy group
• Learn the basics of their condition (for example, simple seizure first aid, or what phantom limb feelings are) so they don’t have to teach you everything
• Let them talk about guilt, fear or grief without rushing to cheer them up
• Mark your calendar for a check-in a month, three months and a year later
• Offer company for check-ups or rehab sessions, which can stir up fear

Try not to say

• “Be grateful, you’re lucky to be alive.” (They may already feel guilty about struggling.)
• “I could never cope with that.”
• “You don’t look sick.”

Conditions like HIV, epilepsy or a visible difference can bring unfair judgment. Because of stigma, some people keep their diagnosis private or pull away from others. Whether and when to tell people is their choice, never yours.

How to help

• Ask, “Is there anything you’d like me to say if people ask?”
• Keep what they share private unless they say otherwise
• Speak up kindly when you hear myths or jokes
• Use respectful language: “a person living with HIV”, “a person with epilepsy”

Supporting someone long-term can be tiring and lonely. You may grieve changes in your relationship or your own plans. Looking after yourself is not selfish. It helps you keep going.

What helps

• Join a caregiver support group
• Keep up your own friendships and interests
• Take regular breaks and accept help from others
• Talk to a counselor if you feel overwhelmed

Groups exist for many conditions, from epilepsy and HIV to transplant and limb loss. They can be in person, by phone or online.

Finding one

• Ask your clinical provider, hospital social worker or clinic
• Check libraries, community centers and faith groups
• Look for a national organization for your condition
• Try online groups if travel is hard

Some organizations match you with a trained volunteer who lives with the same condition. For example, the Amputee Coalition offers peer visits from people who have lived with limb loss.

A peer can help with

• Feeling less alone in the early days
• Hope that life can be full again
• Practical tips for daily life
• Questions you feel shy asking a doctor

Some people find meaning in sharing their experience: mentoring someone newly diagnosed, raising awareness or volunteering in small ways that fit their energy.

Ideas

• Share what helped you (and what didn’t)
• Volunteer from home, such as writing cards or helping with online tasks
• Welcome new members in a support group

Reaching out to a friend, a loved one or someone in your faith community is one way people with long-term conditions look after their mental health.

Ideas

• Ask a faith leader or community group about visiting or meal schemes
• Join a low-energy club, like a book or craft group
• Let neighbors know how they can help on bad days