People with chronic illness may value the care they get from their healthcare team, but many also want to take an active role in managing their illness. Distress can be hard for some people to manage on their own. Don’t hesitate to talk to your healthcare team when you’re feeling distress that’s hard to handle. Remember that every person is different, and you can work with your healthcare care team to find the best action to take based on your own situation.
Do’s and don’ts
Here are some thoughts from experts about managing distress that include tips that might be helpful (the Do’s) and some actions that could be harmful (the Don’ts).
- Rely on ways of coping that have helped you solve problems and crises in the past. Know that almost everyone needs to have people around them they can count on to help when needed. Find someone you feel comfortable talking with about your illness. When you would rather not talk, you may find that relaxation, meditation, listening to music, or other things that calm you are helpful. Use whatever has worked for you before, but if what you’re doing isn’t working, find a different way to cope, or get professional help.
- Deal with your disease symptoms “one day at a time.”Try to leave worries about the future behind. The task of coping with chronic illness often seems less overwhelming when you break it up into “day bites.” This also allows you to focus on getting the most out of each day despite your illness.
- Use support and self-help groups if they make you feel better. Support groups for people with similar experiences can help us feel less alone. Leave any group that makes you feel worse.
- Find a doctor who lets you ask all your questions. Make sure there’s a feeling of mutual respect and trust. Insist on being a partner in your treatment. Ask what side-effects you should expect and be prepared for them. Knowing what problems may come often makes it easier to handle them, if and when they happen.
- Be honest with your healthcare team—and yourself—about the intensity of symptoms and side-effects. Sometimes, we tend to “qualify” or minimize our symptoms, fearful that if we are honest about how bad they are, we won’t be believed. This is like placing blinders on your healthcare team to find the best treatment to reduce your suffering and treat your illness.
- Explore spiritual and religious beliefs and practices, such as prayer or meditation that may have helped you in the past. Even if you don’t think of yourself as a religious or spiritual person, get support from any belief system that you value. This may comfort you and even help you find meaning in the experience of your illness.
- Keep personal records of your doctors’ numbers, dates of treatments, lab values, x-rays, scans, symptoms, side effects, medicines, and general medical status. Information about the disease and your treatment is important to have, and no one can keep it better than you. This also helps communication when you are referred to another specialist. Carry a list of providers’ contact information with you at all times.
- Keep a journal to express your thoughts and feelings without holding back. It can help you process the journey, and you may be amazed by how helpful it can be. Research indicates that it strengthens resilience to setbacks or disappointments.
- Blame yourself for causing your disease. There’s no scientific proof linking certain personalities or emotional states to causing a chronic illness. Even if you have increased your disease risk through unhealthy habits, it does not help to blame yourself or beat yourself up.
- Feel guilty if you can’t keep a positive attitude all the time. Low periods will come, no matter how great you are at coping. There is little evidence that such times have a bad effect on your health or tumor growth. But if they become frequent or severe, get help.
- Suffer in silence. Don’t try to go it alone. Get support from your family, loved ones, friends, doctor, clergy, or those you meet in support groups who understand what you’re going through. You will likely cope better and take better care of yourself with people around who care about you and can help encourage and support you. Research shows that when people feel cared for, their symptoms are often less severe.
- Be embarrassed or ashamed to get help from a mental health expertfor anxiety or depression that disrupts your sleep, eating, ability to concentrate, ability to function normally, or if you feel your distress is getting out of control.
- Keep your worries or symptoms (physical or psychological) secret from the person closest to you.Ask this person to come with you to appointments and talk about your treatment. Research shows that people don’t often hear or absorb information when they are very anxious. A close friend or family member can help you recall and interpret what was said. They can be sure you tell the healthcare team about any changes or new concerns, too. As a practical matter, your friend or loved one can also help you get home from a doctor’s visit or medical test.
- Abandon your regular treatment for an alternative therapy. If you use treatments that your doctor didn’t recommend, use only those that you know do no harm. Find out if the treatment can be safely used along with your regular therapies (known as a complementary therapy) to improve your quality of life. Be sure to tell your doctor which treatments you are using along with medical treatment, since some should not be used while receiving medical treatments. Discuss the pros and cons of any alternative or complementary therapieswith someone you can trust to look at them more objectively than you may be able to when you are under stress. Psychological, social, and spiritual approaches are often helpful and safe, and doctors generally encourage their use.
Other ways to help manage distress
Support groups and counseling
Finding and going to a support group can help ease feelings of distress by offering emotional support and education for patients and families. Support groups can also help you find community resources. If a support group is not available or does not appeal to someone, a social worker may be able to help find other options. Sometimes group or individual counseling may be a good option, depending on the problem or problems that are most likely causing the feelings of distress. Support groups or counseling may help with:
- Adjusting to illness or changes in dignosis
- Family and caregiver conflicts
- Process thoughts and feelings related to treatment decisions
- Concern about the quality of life
- Problems adjusting to changes in care
- Making decisions for future medical care (advance directives)
- When there is abuse or neglect in the home
- Trouble coping or problems communicating effectively with medical professionals
- Changes in how you think and feel about your body and your sexual self
- Grief problems
- End-of-life issues
- Cultural concerns
- Caregiver issues or the need to set up caregiver support
- Trauma related to failed treatments or surgeries
Sometimes having a chronic illness affects your day-to-day needs. These are common, practical problems that a case worker can help you and your family or loved ones manage. They may be able to link people to community agencies, teach problem-solving approaches, help get needed care, and offer education and support group sessions. Some practical problems they can help with include:
- Transportation problems or other illness-related concerns (for instance, how to get to treatment every day, how to pay for parking, or where to stay for out-of-town overnight hospital visits
- Financial concerns
- Job concerns
- School concerns
- Food costs and preparation
- Help with daily activities
- Cultural or language differences
- Finding help for family and caregivers
Relaxation, meditation, creative therapies
Therapies and activities that help you relax are often helpful easing some forms of distress. These might include relaxation exercises, yoga, mindfulness, meditation, massage, and guided imagery. Creative therapies like art, dance, and music have also been shown to be helpful for people in some stressful situations. Animal assisted therapy (AAT), also known as pet therapy, involves spending time with therapy animals, is another option that some people might find interesting and worthwhile.
In a time of crisis, many people prefer to talk with a person from their spiritual or religious group. Today, many clergy have training in pastoral counseling for people with chronic illness. They’re often available to the healthcare team and will see patients who don’t have their own clergy or religious counselor. Pastoral services are important because there can be different times during a person’s journey when a crisis might lead to questioning their faith or needing to rely on it more.
Exercise is not only safe for most people during medical treatment, but it can also help you feel better. Moderate exercise has been shown to help with tiredness, anxiety, muscle strength, and heart and blood vessel fitness, but even light exercise can be helpful in staying as healthy as possible. For instance, walking is a good way to get started and a good way to keep moving when you’re feeling stressed.
For some illnesses, exercise is limited, but research shows that many forms of body movement can be modified for limited mobility. Talk with your doctor about your exercise plans before you start. Depending on your level of physical fitness, you may need help from a body movement therapist to make a plan that will work for you and is safe.
Keep in mind that even though exercise may help lower distress levels in some people, exercise alone is usually not enough to help people with moderate to severe distress.
Mental health services
Mental health services are used for a myriad of issues from treating distress that’s moderate to severe to processing important decisions regarding your life and health to making lifestyle changes to improve physical health. This type of distress may be caused by other emotional or psychiatric problems the person had before the disease was diagnosed. Some problems that can make it harder to cope and may be worsened by the distress of chronic disease include:
- Major depression
- Memory issues
- Panic attacks
- Mood disorders
- Personality disorders
- Adjustment disorders
- Substance abuse
- Relationship issues
- End of life issues and decision making
- Inappropriate guilt or shame
- Exploring what your illness experience means to you and how it impacts your self-image
Mental health professionals use a range of counseling and therapy approaches to help you cope. They often start by helping you figure out what has worked well for you in the past. They will respect your coping style and try to help you strengthen it. They can help you understand how past problems or experiences may be making it harder to deal with disease. They may also teach you new coping skills like relaxation and meditation to help manage distress.
Sometimes a drug is needed to reduce distress related to chronic illness, distress caused by a medicine to treat your disease, or another serious symptom. For example, steroids (like prednisone or Decadron®) may cause mood swings. Opioid pain medicines (like morphine or fentanyl) in higher doses can cause confused thinking. Medicines may be needed to counter these symptoms.
You can work with your healthcare team and a mental health professional to decide if medication might be helpful. Sometimes medicines to treat depression (anti-depressants) or to treat anxiety (anti-anxiety medicines) are options that may reduce distress and help with poor sleep and appetite.