Living with a chronic illness - reaching out to others
A chronic illness is a long-term health condition that does not have a cure. Some examples of chronic illnesses are epilepsy, heart disease, diabetes, asthma, COPD, cancer, HIV, Alzheimer's and dementia, multiple sclerosis, Parkinson's disease, cystic fibrosis, Crohn's disease, and arthritis.
Living with chronic illness can make you feel very alone. Learn about staying connected with people to help cope with your illness.
Talk with People Who Have the Same Illness
Know that you have so much to share and learn from other people.
Learn that others may have the same feelings as you and that they know what you are going through.
Find a support group in your area for people who have the same chronic illness as you. Many organizations and hospitals run support groups. Ask your doctor or nurse how to find one. For example, if you have heart disease, the American Heart Association may offer or know of a support group in your area.
Find an online group. There are online blogs and discussion groups about many topics, and you may find support this way.
Tell Others about Your Chronic Illness
Know that they care about you and that their support will help you.
You may find it hard to tell others that you have a chronic illness. You may worry that they will not want to know about it or that they will judge you. You may feel embarrassed about your illness. These are normal feelings. Thinking about telling people can be harder than actually telling them.
Know that people will react in different ways. They may be:
Nervous. Some people might not know what to say, or they might worry they will say the wrong thing. Let them know that there is no right way to react and no perfect thing to say.
Helpful. They know someone else with the same illness so they are familiar with what is going on for you.
Know that you need everyone’s support.
You may look and feel fine most of the time. But at some point, you may feel ill or have less energy. You may not be able to work as hard, or you may need to take breaks for self-care. When this happens, you want people to know about your illness so they understand what is going on.
Tell people about your illness to keep you safe. If you have a medical emergency, you want people to know what is going on. For example:
If you have epilepsy your co-workers should know what to do if you have a seizure.
If you have diabetes, they should know what the symptoms of low blood sugar are and what to do.
Let People Help You
There may be people in your life who want to help you take care of yourself. Let your friends and loved ones know how they can help you. Sometimes you just might need someone to talk to.
You may not always want people’s help. You might not want their advice.
Tell them as much as you feel comfortable telling them about your illness and how you manage it. Ask them to respect your privacy if you don’t want to talk about it.
If you attend a support group, you may want to take friends, family members, or others along. This can help them learn more about your illness and how to support you.
If you are involved in an online discussion group, you might want to show family or friends some of the postings to help them learn more.
If you are alone and do not know where to find support:
Ask your doctor or nurse for ideas about where you can find support.
See if there is an agency where you can volunteer. Many health agencies rely on volunteers. For example, if you have cancer, you may be able to volunteer at the American Cancer Society.
Find out if there are talks or classes about your illness in your area. Some hospitals and clinics may offer these. This can be a good way to meet others with the same illness.
Get Help With Your Daily Tasks
You may need help with your self-care tasks, getting to appointments, shopping, or household chores. Keep a list of people who you can ask for help. Learn to be comfortable accepting help when it is offered. Many people are happy to help and are glad to be asked.
If you do not know someone who can help you, ask your doctor, nurse, or social worker about different services that may be available in your area. You may be able to get meals delivered to your home, help from a home health aide, or other services.
David C. Dugdale, III, MD, Professor of Medicine, Division of General Medicine, Department of Medicine, University of Washington School of Medicine. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M. Health Solutions, Ebix, Inc.